This has been a long journey and I am so desperate. I'm hoping someone here can at last enlighten me. In January I started having lower bsck pain. By March it has developed and I started having burning in my buttocks and aching. Sitting is unbearable because of the burning in my buttocks.
Can anybody here relate and tell me if these are symptoms of hyper tonic pelvic floor?
I've been told my pelvic floor is tight. Could this really be the cause?
I'm so sorry that you're suffering so much. ❤️ I have a hypertonic pelvic floor, which is extremely painful, but not in the way that you're describing. The burning could possibly mean nerve involvement? I would recommend seeing a urogynecologist if you haven't already. For nerve pain, doctors usually hand out the dreaded gabapentin or pregabalin. Some people get used to them, others feel rather zombie-like on them, but if you're in this much pain, you should probably take what they offer and see if it helps you. If you can't see a urogynecologist right away, maybe your primary care doctor or GP might be able to help until then, or a pain specialist? Definitely go see someone if you haven't. I hope that you'll find some real relief soon.
How is a urogyno different to gyno? Do they deal with buttock nerve pain?
I've seen a spinal surgeon, no luck.
Neurologist. No luck.
Pain specialist. No luck.
I've had 4 MRIs. No luck.
Gynocologist. He said not endo but have tight pelvic floor.
Can a tight pelvic floor cause this type of pain? I'm so confused. What's your pain like?
Wow, that is a long list of doctors who have let you down. ☹️ That's horrible! I hope that someone with pain more like yours will respond to you with more advice. A urogynecologist pretty much specializes in overall pelvic health, not just the reproductive system. I'm surprised no one has offered you medication, at least. Are you in the US or elsewhere?
My pain is like menstrual cramps X 10.
UK.I tried pregablin but I passed out
Also Pregabalin can givecyou suicidal thoughts
Yes I have a hypertonic pelvic. Pelvic floor disorder same thing I have nerve pain so bad and i rarely get a break it’s been 5 years. I am doing ketemine treatments once a month it seems to help but I want more better results it did help a lot with the depression and suicidal ideation I would love to try micro dosing psilocybin I know someone who did that and it cured hers she did a big dose. I have micro dosed I had better results.
I'm so sorry. I hope someone else can offer more suggestions and possibly share the names of doctors or clinics that can help you? Maybe edit your post to include your location and ask for that info if you like? I'm in the US, so I don't have much to offer thay way.
Pelvic floor problems can definitely cause buttock pain and effect everything around that pelvic area. Seeing a Gynae first would be helpful and if it is pelvic floor problem a specialist women’s health physiotherapist is the next move.
Gyno said not endo and wasn't sure what my problem was. I've just seen a pelvic floor physio. She has given me some breathing exercises to do.
Will that really help???
I’m very sorry to hear about your pain. Unfortunately many doctors don’t know enough about pelvic pain. It sounds as if you have consulted some of these. I agree with bantam 12 that a women’s health, specialist physiotherapist should be able to help. It sounds as if the one you have already been to was not such a specialist. I don’t know where you live, but if you’re in the UK you will find a list of recognised physios with the help of Mr Google. Such a physio would do an internal examination and would be able to help with a tight pelvic floor, myofascial pain and connected problems. She may also suggest breathing exercises but not as the only suggestion. I speak from experience. I also know, but not from personal experience, that it is often difficult get endo diagnosed correctly.
I do hope you can find someone to help you.
Morning,
Sorry to hear you’re going through this.
Can I ask a few questions to potentially help.
1. You have pain when sitting, relieved when standing or lying ?
2. Pain in the territory of the saddle, buttocks, lower back, pain that moves around the pelvis ?
3. Is sitting on a toilet seat more comfortable and better tolerated than a normal chair ?
4. Pain is absent when asleep ? Important
5. Any urination or deficating frequency or abnormal sensation.
6. Any previous nerve blocks performed ?
Regards,
Scott
you can direct message me if preferable
No nerve blocks have been performed. I have to sleep on my front it still burns but more tolerable.
I used to be more comfortable on the toilet but not anymore it hurts no matter where I sit.
I predominantly in the buttocks and backs of tops of legs. But buttocks is just unbearable.
I have stiffness in lower back when walking for to long. But this originally started with back stiffness.
I've had 4 MRIs and they are all perfectly normal so no spinal issues.
Sorry to hear about your lack of support from specialists docs.After many years of pelvic pain I was diagnosed with levator ani syndrome which causes severe painful pelvic floor spasms, pain in buttocks especially when sitting and burning rectal pain which affects my ability to have a normal bowel motion. With the support of my specialist womens physio she does internal/external vaginal trigger point therapy which helps alleviate some of the painful spasms. She also supports me with monitoring my use of daily trans anal irrigation as only way of enabling my bowel to work.
Physio works alongside my urogyneacologist who does botox injections into pelvic floor. Combination of treatments doesn't eradicate pain but definitely makes it more bearable.
Also supported by my colorectal consultant.
These specialists work as a team and I see all three at clinic catch up appointments instead of the old way of waiting long time to see them individually. This is provided within the NHS. They collaborate together to provide me with the most effective treatment plan.
I hope this gives an insight into what treatments are available and maybe talk to your physio about more intensive treatments or tests that could give you a diagnosis.
Wishing you future good health. Stay strong
Hi, I've been through something really similar and you're right it is a long journey to understand our bodies and our reactions to pain. A key thing for me was not getting frightened and anxious because that amplified everything and made everything worse. I was bouncing from one worry to the next - how painful will it be when I sit/stand up/get up etc was making the pain worse or my perception of the pain worse. Along side my journey I've ensured I've done everything I can to support mental health and anxiety.
I have PGAD (persistent Genital Arousal Disorder/overtightened pelvic floor/hypertonic pelvic floor, plus lower back pain that was unmanageable and often resulted in whole back spasms for which codeine was the only solution. I saw a gynaecology physio who really helped (and importantly - understood!) with the pelvic problems - which I now manage successfully, but was unable to help with the back pain. In UK you can usually self refer to gynie physios.
Physio/MRI's/Dr's have not been helpful with the lower back pain at all - which is around buttocks too when bad - they just threw drugs at me. Talking to others, reading online etc I've tried different exercises, some of which help (tip - do one for a while to see if it helps, I initially tried several together which made it all much worse). Because I was not in a good way and it had gone on for so long and got so bad, I decided to be patient and knew it would be a long journey. This has really helped.
In Jan I started swimming and that has been really useful - moving my body in water when relaxed helped me understand where the pain was and how it was moving and what triggered it (I did exercises and movements in the deep end).
One exercise that has helped me when I recognise my lower back tightening into spasm is pushing my shoulder blades back as far as I can and keeping them there for around 5-10 secs and repeating several times. Strange that this works when it is not near the source of the pain. It has stopped me needing codeine and I haven't had a spasm this year.
I've also started Qi Gong (10 minute you tube Lee Holden videos) and this has been amazing for relaxing my core and pelvic floor. I have more movement in my lower back now and I'm really hopeful of being able to manage the pain and these conditions going forward.
I hope something here may help with your journey. Best of luck. Sarah
speaking from my personal experience…I would find a pelvic pain specialist NOT a pain specialist A PELVIC PAIN SPECIALIST there is a huge difference..you need to get a proper diagnosis these dr.’s will send you to 20 different dr’s that have no clue about pelvic nerves…some women i know that live in the UK have to go to France for proper treatment …so please do yourself a favor..again in my personal experience in the span of 2 years I saw 15 different dr.’s many different drugs and treatments that only made me worse…I went out of state saw a Pelvic Pain Dr. got a diagnosis had a nerve block that made me feel much worse…I jumped off of the medical band wagon read the book “Healing Pelvic Pain” by Amy Stein and started yoga 🧘♀️ and I have got an herbalist…I will not go back to the medical profession for my nerve condition….you have to get the proper diagnosis..I hope this helps you as it has me ..I know of women that have gone as far as getting a pain pump in planted and still have no relief…I have learned if you have a nerve condition ( again why you need a proper diagnosis) the more they try to fix you the worse I became… did not start to feel better till I stoped with the dr’s…remember the medical profession dose not make money if you are cured …i will never be 100% but am now able to live life again..I truly hope this helps ❤️
I'm confused. You say find a pelvic pain specialist but then you said it made you worse? What do I do?!
You need the correct diagnosis, and a pelvic pain specialist is more likely to find that out. Otherwise most of us spent years trying to find out. Then you can start looking at treatments.
I've tried. No one knows. Forget it. I've spoken to a million people. If I knew how to get a correct diagnosis I eoild do it but every doctor I jave spoken to is an idiot snd believe me the list of people I have spoken to is a joke
so sorry that you didn’t understand …you need to get to a pelvic pain specialist to get a proper diagnosis..again I can only tell you of my personal experience once I was diagnosed (after 2 years of suffering) I then had the nerve block that made me worse BUT once I was diagnosed I was able to find the right treatment for me and unfortunately the medical profession was not my personal answer…I did much research library on line ect unfortunately I was the one who had to find the right treatment again my personal experience…the more the medical dr.’s treated me the worse I felt and when I read some of these stories from other women I am not alone…we truly have to take the responsibility of our own health again only my personal experience there is no care in health care….wishing you much luck on your journey I pray you and others can find the right treatment
Hello, I'm writing from New Jersey in the U.S. So sorry for your pain. It sounds to me like you might have Pudendal Neuropathy/Neuralgia. I've had PN for more than 25 years and it is awful. I wish I could offer some advice on medical treatment. But unfortunately, there is no cure for pudendal neuropathy. The most that can be hoped for is the managing of symptoms. I see a Pain Management Specialist here in the U.S. He has had me on Lyrica for years now - in spite of my 40 lb. weight gain. He also does periodic injections to manage the pain. My symptoms started out really subtle and then grew to an unbearable burning sensation in my abdomen, hips, lower back and pelvis area. Sitting down was awful. But over the years - with the grace of God and my wonderful support system - in the form of family and friends - I've managed to live with my PN as best as I can. But it is never easy. I have some really bad days and then I have manageable days. I take the "good with the bad" and try to get through the day one-day-at-a-time. My advice would be to NEVER give up fighting or advocating for yourself. Only YOU know how you feel. Don't let anyone dictate how to feel or what to do. Educate yourself about your condition/symptoms and seek medical treatment - go to see whichever doctor you think is best. Tell him or her your suspicions about possibly having PN and don't let them tell you that it might "be in your head." Hang in there and you'll be in my prayers. Peace!
I don't understand how you learn to live with it. Its impossible
believe me when you say you cant live with it its impossible all of the people on this site thought the same as you but unfortunately you still wake up and yes the condition you have is still there raising its ugly head. I'm unsure what yours is but its definitely nerve pain a lot of the symptoms your feeling are similar except others have rectal and or vaginal burning severe pain along with bowel dysfunction feeling of unable to defecate normally or urinary dysfunction. Pudendal neuropathy was what I eventually got diagnosed with 6years ago. I was a nurse fully active no bowel problems or any health issues extremely fit and out and about. All that changed for me after a accident where I broke my foot long story of complete mis management but essentially was sent back to work foot still in pain and before l knew it ended up severe rectal pain and unable to use bowels I thought how I might just have hemorrhoids as pain in rectal area was nothing I ever thought possible my journey from their was a rough one like many on this forum ps if you think how could a broken foot and working on it unhealed as doctors said was but later found wasn't could lead to this well turns out our pelvic floor carries our weight and pain so any wrong new movement dynamics made to compensate for other areas of our body can cause pelvic dysfunction and nerve pain due to aggravating an area yes long story and yours is yet to be discovered. you have so far gone to many that many of us did too however you will fall upon a team of doctors and this usually is organized by the specialist who does eventually diagnose you yes sound long and unrelated but truly we too were like you this condition and one like yours are not studied enough but times have changed and they are doing really lots research now . I went to a Colorectal surgeon who did nerve tests and many more it was all terrible but I ended up with a team he referred me to a pelvic floor specialist who help retrain your body back well they try also got referred for biofeedback therapy which entails trying to teach you relearn to use bowel again and pelvic floor muscles also referred pain clinic whom have been so kind I did have pudendal nerve and ganglion impar injections none helped but is worth trying as many have been successful and Botox injections I have also had decompression surgery on both pudendal nerve and ganglion impar with some effect but not much I have a compassionate doctor who does prescribe good pain medications which do work now finally also a bowel Nurse in my team at the hospital I do now have peristeen systems for my bowel routine for anal irrigation to help bowels I truly feel for you I am being completely frank and hope not to offend however this is your journey trust you will get there do start with a good GP ask for referral to pelvic floor specialist and pain specialist at the hospital .Because you have not rectal burning well colorectal specialist won't help but you will eventually get a pathway and yes it sucks but resilience and advocating for yourself everyday turns to a path this is painful, I won't Lollie it up cause its not fun or picnic I should say. I had to leave my work from Queensland Health as a fit normal active nurse to now disabled due to this cruel condition but I have no choice but to do what life has thrown this is a very complex condition especially nerve pain it is a completely different kind of pain and requires a expert compassionate team that is the hard part it does take a long time to piece together my love sent and healing sent. we all feel your pain and know it well. Love a Pedundal nerve survivor . You will get many kinds of advice read up and know you are not alone.
Thsnk you. So it's permenant basically?
Hi Popcorn
I’m sorry you have had such an awful journey
I have chronic pelvic pain and am on pregabalin, 150mg per day
I have found a book called The Way Out (Heal Chronic Pain) by Alan Gordon very helpful indeed .
You have to open your mind to it and give it a read. If it chimes with you have a go !
I have found it so helpful and reassuring.
It has enabled me to halve my pregabalin dose and have a lot of pain free days and much less worry
Good Luck
I did try that book! It didn't work for me! What's your oelvic pain like?
Hi I’ve got a condition called Pudendal Neuralgia, it was diagnosed in 2019 by a uro gynaecologist, at the time I’d never heard of it and not a lot of people have to this day! I’m on a facebook support group for it. There’s no research done on this condition & one of our moderators is working tirelessly to raise awareness not only in the general population but also the medical community too! She’s also written a book about it, now available on Amazon.You’d be surprised how many medical professionals don’t know about the condition of PN as it’s not part of their training!
I am in so much pain I’ve had to give up working, no pain meds have worked & there is no cure! Men can also have this condition, one the main causes in men is cycling as sitting on a bike saddle to much can damage the pudendal nerves!
My symptoms are:
Burning pain inside the vaginal canal & external labia.
Unable to sit for more than a few minutes
Numbness of the labia
Painful intercourse
Frequent bladder emptying
Low back pain
There’s many more symptoms, it could be this you have? Just another area for you to consider.
How on earth do u put up with ut? I thought there were people in framce who can help with this?
There are if you can afford to pay for it.
Hopefully you will have seen that tree-tops has posted a link to an episode of the BBC podcast "Best of Today" about living with chronic pain. It is not about pelvic pain but I would highly recommend it as the 30-minute programme covers many different aspects, including the mind-body link. Above all, it offers encouragement to be open-minded to different ideas and then to find one's own way.
Hi sorry to hear about your pain and not being to get help from the medical profession.
Where did you see the pain specialist? There is a pain management service at NHS Sandwell and West Birmingham hospitals. A referral from your GP is needed. And then there is the waiting list!!
Don't know where you are in the UK. There is a pain clinic in Bristol at the Nuffield Health Bristol Hospital.
May be seeing a different pain specialist will help. Hope this helps. All the best
Thank you. It's a bit far for me because I can't sit for more than 2 minutes. Ridiculous. At this point I want to know who the right person is. I've seen so many people now I don't want to waste anymore time
I have the same exact symptoms but mine is from spinal stenosis. I told my primary care physician about my symptoms and he sent me to orthopedic spine specialist. After a CT scan and MRI it was clear that I had spinal stenosis. Look it up and from the symptoms you should be able to determine the possibility that it may be the above. If you feel it might be a spine issue follow your insurance procedures to get an appointment with the he appropriate specialist. I have to through my primary care physician to get a referral. I have also had pelvic floor issues that I believe exacerbates my back pain.
I've had 4 mris. Spine is clear
Sounds like pudendal neuralgia, contact Dr Greenslade at the Bristol Pain Clinic. He is a specialist in pain management and pudendal neuralgia.
Advice Please 
Undiagnosed Chronic pelvic pain 
