Cluneal Neuralgia: the pain is still there, but I fight to stay positive
7 Nov 2019
After several false diagnoses, Peggy found out she was suffering from cluneal neuralgia, a condition that causes such intense pain that she can’t stay seated for more than a few moments. Here, she talks about her journey towards diagnosis and her daily efforts to live a normal life.
Hello and thank you for agreeing to talk about your condition. Can you tell us a little about yourself?
I’m a 46-year-old woman who’s always suffered from health problems: slipped disks, sciatic nerve, cervicobrachial neuralgia, tendinitis, endometriosis, Irritable Bowel Syndrome, I could go on and on. I have three grown-up and beautiful children with perfect health and I love to help others.
When did your first symptoms appear?
6 months after I had a hysterectomy at the end of November 2016, I was suffering from incontinence and a slight pain in my groin. I was told to see my surgeon to make sure there were no problems linked to my operation. She immediately asked me to do a pelvic ultrasound which showed that I had a prolapsed bladder and perineum.
That set off a whole production. I had to go see a urologist who had me do a whole battery of tests: cystoscopy, cystography and half a dozen others that I don’t remember the names of, but it lasted a year, with an appointment every two months or so. I had to undergo an operation to “put my organs back in place”. I found out I had a bladder and rectal hernia. After a year of waiting, I finally saw the head surgeon who flat turned me down, said she wasn’t about to operate on me and also said:
"There’s no reason to operate on you. Your bladder is perfectly fine and you can live very well with a prolapse, besides I don’t know how you did it, but your prolapse is getting better and even moved up a bit."
"That’s probably because I’ve living flat on my back for the past 2 months", I said.
"Then you need to keep doing that", she replied.
"I’m in pain", I told her, "It hurts so bad I can’t even stand up."
"A prolapse doesn’t hurt." she said, "If you’re hurting that means there’s something else the matter, maybe because you had a recent death in the family."
Did your symptoms have an effect on your love life, social life or professional life?
It hurt more and more to stand up and last September, I broke down. I went to see my GP who decided to put me on sick leave for the time it would take to get a handle on my pain. I haven’t been able to work since. Most of the time, I‘m lying down and I can’t see any of my old workmates. I only talk with my aunt who’s like a mother to me and since I can’t stay seated I can’t go out to a restaurant, or to a friend’s house, or travel. Talking on the telephone is well and good, but after a while, you run out of things to say, especially when you have no social life and since I can’t feel anything below the belt my sex life is shot too. My husband’s a good man, he’s stayed by my side, but this is no way to live, always lying down.
Did you see a lot of doctors before you were able to get a proper diagnosis? What did you believe was wrong with you?
I went to see a gynaecological surgeon who specialised in endometriosis, then I went to see a urology surgeon who told me, wrongly, that I had a prolapses and that was what was causing the pain and then the head surgeon, then I thought maybe I was hurting because of the bladder and rectal hernias: since they were tangled up with each other, that must have been what was pressing on my bladder…I had to go see a gastric surgeon who told me there was nothing wrong there, that it was a neuropathic issue, without explaining to me what that meant. I’ve seen my GP God only knows how many times. I went to A&E twice, but they told me to wait until I did an EMG (electromyography). I’ve also been to a general medicine specialist that told me that it was surely pudendal nerve neuralgia but we had to wait for the EMG to know for sure. And finally, I went to a pain specialist who was the only one who could tell me what was actually wrong with me.
When did you finally get the correct diagnosis? How did it happen and how did you feel?
I was diagnosed on the 28th of August, 2019, the doctor finally understood what was wrong and she told me, “It’s cluneal neuralgia”. It was almost a relief to hear the diagnosis, that this wasn’t all in my head, that what I was feeling was real, that it was this nerve that controls the lower abdominal and gluteal muscles. It was aggravated by the fact that my hip muscles had atrophied due to lack of use. When my organs fell down, they pressed on that nerve and caused by hip muscles to atrophy. Every time I eat or drink something, my organs which are already in a fragile state work very slowly since everything is knotted up, with all of the surgical inventions and the delayed diagnostic…Everything got inflamed because no action was taken. When I stand up, that presses on those muscles who can’t understand why they’re being called on to do so much work and so they contract as hard as they can which is where the pain was coming from.
You were prescribed specialised osteopathic and abdominal-genital fasciatherapy sessions
The osteopath was very kind, she took note of all the letters from the doctors I had seen, she asked me how I felt and where I hurt, then she did a surface exam. Then she explained to me in detail what was wrong with me and she was going to try to do to help me.
Then I lay down and she tried massaging my swollen stomach. She asked me to breathe in and puff out my stomach, it puffed out on top but not on the bottom. She massaged it gently without hurting me, then she pressed lightly on the nerve so that I could know exactly where it was, it was quite painful. Then she asked me to sit down and she put her hands under my backside to see where the pain was coming from. As soon as I put my weight down on her hands, in just a few seconds, the pain was unbearable. She then observed me as I took a few steps.
She told me to wait 48 hours before I made any more big efforts and that I should rest for the time being.
Do you still get treatment for your condition?
I take 600mg of Pregabalin, spread out over 4 times in a day, Paracetamol paired with Tramadol when I’m hurting and 3 to 5 drops of Amitriptyline. For my stomach, I take 2 Phloroglucinol tablets before every meal, a dose of Gaviscon and an Omeprazole tablet once a day. I take one dose of Movicol a day for constipation.
Do you do any sort of athletic activities?
I do physical therapy twice a week with stretching exercises and perineal therapy. Once a day I use a device to stimulate the nerve. I don’t use seat cushions. For the moment, I’m not due for any more surgery, we’re waiting to see how I respond to my current treatment.
How do you feel now? And how do you stay positive?
I stay positive because I must, I still have my third child to raise, so I can’t lie about like a vegetable. I’m in pain, but I still have a laugh sometimes, you got to. My older children also need me, so I can’t quit just yet.
What are the symptoms that won’t go away? What’s hardest for you during the day?
The pain is still there despite all the medication I take and even if it’s hard to stay standing I feel like I’m getting stronger and I’m able to walk longer distances.
The hardest thing is having to do everything standing up or lying down. I’d love to sit down, go to the cinema or to a restaurant. It’s hard not to be able to do those things.
Do you feel like your friends and family support you?
Yes, anyone who’s close to me knows I don’t whinge for no good reason and they want me to get better. My husband would like to be able to do more for me, he feels useless sometimes and my children all want to see me get better. My youngest hates to see me like this, he’d love for me to get up and move about, so he gives me little pinches on the arm or the ears and other bothersome things. I’d like to be able to go outside with him, but I can’t, so I keep quiet.
I’m the secretary of a renter’s association, the president is a friend of mine who thinks it’s all a little in my head, that if I just got up and kept busy, I could get back to work and do I the things I used to do, like help her with the association.
What advice would you give to a patient who’s still waiting for a diagnosis or just got diagnosed?
Whatever you do, don’t stop moving and get some help from a counsellor because you need to talk to someone who isn’t going to judge you. You’ve got to laugh a little and if you can’t do something you love anymore, find a substitute. For example, I replaced the cinema with Netflix and I watch a load of series and I play internet games, sketch – all of that calms me down. And most of all, don’t give up and let yourself sink into a funk. If you get depressed, call someone who can cheer you up.
Thank you Peggy for sharing your experience. What about you? How were you diagnosed with Cluneal Neuralgia? What treatments have worked for you?