I was diagnosed with PN in June by my physio and immediately after an appointment with him i was in severe pain that lasted weeks. I had another appointment on Tuesday and woke up today (sat) in a lot of pain! don't know if maybe he is targeting the wrong area or not? i recently just read that my physios work only helps males with PN, therefore am unsure what to do? I also spoke of getting pain management for this condition and was advised to not do so. Should i look around? i found a female physio who only works on women maybe she is more suited. Also was wondering if anyone had any tips on how to fasten the process of a flare up going down? do most people just lay on their back? or do people find help in heat packs/ice? any suggestions? Thankyou x
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lala93
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Who told you not to get pain management? That's a big part of helping manage your symptoms. I know I'm not spelling this correctly but you should be taking a tricyclic antidepressant and anti convulsant. Go to other websites and you will read what others take. I take amatriptolyn and gabapentin a topical cream with these 2 meds combined. It really helps.i don't know if going to a therapist who mainly treats males with this condition is good or bad but if it were me and you have options I would find someone else. This therapist could do more harm than good. Not saying that a flare after therapy may not be the norm. I would go on different websites like hope pudendalhope.oeg. I think you will benefit greatly from the posts out there.
I've been dealing with this for over. 1 years which is nothing compared to people posting on the website I just listed. The advice and education you get from them will be more helpful than most doctors/ therapists.
In my experience physio can sometimes cause flare-ups - if they get to a particularly sensitive spot. The massage improves the blood flow, which is a good thing, but then of course you have to deal with the pain.
I should trust your gut feeling as far as the physio is concerned. I personally am happier with a woman but if the man is experienced with pelvic pain, he probably knows his job.
With flare-ups I tend to use warmth but with a burning pain I also use ice (ice cube wrapped and moved about the area concerned). Have you got Amy Stein's book "Heal pelvic pain". she has some good suggestions. What does the physio suggest you do / take if you don't get pain management?
thanks for your reply! I went to the physio almost 2 weeks ago now and i am still suffering from irritation! I have an appointment on monday but i don't want to go back as I'm scared that its causing damage. I read somewhere that the exercises that i should be doing involves stretching however a few exercises i am requested to do by my physio are strengthening which is why I think i am in pain. I was told not to take anything for my pain, I don't particularly want to either however the pain is getting worse and lasts for much longer and i am seriously considering getting medication. What type of medication are you taking and does it help? thanks
As far as I know the kind of exercises you need to do depend on whether your pelvic floor and the muscles in the pelvis are tight or not. If they are tight, you need to learn to relax them - as I do. Then stretching is the most you should do. I have had the experience that too much stimulation of trigger points sometimes leads to over-sensitivity. The last time this happened, the flare-up lasted a week.
When I am in pain I take Ibuprofen 400 and sometimes (for burning pain in the pubic area) I take a homeopathic remedy (rhus toxicodendron C30). These are almost always helpful. After 14 months of this pelvic pain business, I don't usually have so much pain doing everyday things anymore but I still can't sit in comfort. What has helped me during this time is: PT, acupuncture and osteopathy.
You wrote that you know of another PT, a woman, whom you could consult. As far as I know Australia has a reasonable network of medical experts in the area of pelvic pain, but of course Australia is a very big country! The website pudendalhope.com ,as someone else suggested provides quite a long list of doctors who can be consulted. Have you had a look at that?And maybe the PT can suggest someone close at hand.
I actually found my physio from that list! haha im pretty confident in the work that is being done, just hopeful that it will help in the long run. My muscles in the pelvis are tight and I do a mixture of stretching and strengthening so im not sure if a mix is good to do? thankyou for your suggestions with pain management, my pain is not bad enough to be on super strong medication so I might give those a go when Im next experiencing a flare up I will continue with my male physio, he is pretty confident in the work and he says my muscles are loosening quite well, if the pain persists after we are done I will contact the female physio but hopefully I wont have to. Thanks for your suggestion! greatly appreciated xx
It isn't unusual to have a flare up after therapy but it shouldn't last. I'm also surprised that a physio advised you against pain management. Do you take anything for the pain ? what part of the country are you in ?
i do not take anything for the pain, i have lidocaine ointment for when i have Paresthesia or shooting pain but no medication, and am living in Brisbane Australia.
It is good to hear that the pain is infrequent but it sounds as though the physio isn't benefitting you long term. You are right that it isn't normal to have a flare up of pain that long after treatment. I note you are in Australia. Have you contacted Pr T Vancaillie in Sydney ? He is a gynaecologist with a major interest in this field and he also qualified in pain management and works closely with a physiotherapist. They did an important published RCT on botox and both he and the physio there are on our medical panel.
I looked up his website and he looks really good, however as he is located in sydney this makes it difficult. I have found 2 female physio's in brisbane who focus on pelvic pain so i might see them and hopefully they can help me. For pain relief whom do i contact? a GP or do i go to a neurologist? Or should i hold off from taking any medication for a while until i see any results from physio?
You could give the new physios a try for a few weeks first. If you don't make any progress I'd consult a GP. If you need to be referred to a pain specialist the GP should know who to refer you to.
hey, yeah i am very concerned that is what is happening! i wasn't really properly diagnosed I found my physio on HOPE org and then told him about my symptoms etc and he did a physical examination and said it was an injury to my sacro iliac joint and that my diagnosis was right, I kind of feel like i want a more substantial diagnosis ( although i understand pn is super hard to diagnose). How did you get your diagnoses?
I asked about pain management and they said it was not good to take because otherwise we will not be able to tell if the physio is helping me but if it dosent help then I should take pain management. I guess this makes sense however I have also read that the longer you go without pain management the less likely medications will work? this is alarming because I have had the pain for several years, however it is very infrequent and 80% of the time i am not in pain. However after my first physio appointment a day before i went on holiday i had the worst flare up I've ever had and it lasted a month which it normally only lasts a few days and i also experienced different pain to normal. He is an amazing physio however he dosent specialise in women or the pelvic area and I don't want to cause further damage which I have a gut feeling it is. They said it is normal to have pain within 24 hours after the appointment but not for weeks after. The physio made the diagnosis of PN, i have not had any further tests because I don't know who else to contact about it? I am located in Brisbane Australia.
So sorry to hear of your struggle with this miserable pain condition. The most helpful advice that I can offer you is that my PCP and OBGYN (who diagnosed me with Pudendal Neuralgia) both agree on the same thing for treatment - physical therapy with a Pelvic Floor Therapist. I have found that they are very few and far between. You may only find one in your city. I went to one, before I was diagnosed, and she was all over the place trying to guess the exact location of my pain. She never mentioned Pudendal Neuralgia, and after 5 visits with her, she told me that she was not going to be able to help me. She would give me exercises/stretches to do, but they were too painful for me to carry out. I feel fortunate that after a year of dealing with my pain, my ortho doctor referred me to an OBGYN who specializes in perenial pain, and she dedicates one day a week to seeing patients who specifically have pelvic/perenial pain. She doesn't have a magic telescope to see what's going on, but goes by your symptoms and a thorough exam. I had already done the research, as most people with chronic pain commonly do, and basically knew that I either had Pudendal Neuralgia, or Pudendal Nerve Entrapment Syndrome. My OBGYN ordered an MRI of my pelvis, with and without contrast, to rule out any masses. Mine showed several small asymmetrically enlarged tortuous veins (varices) close to the left pudendal neurovascular bundle as it courses around the sacrospinous ligament. My OBGYN said that was pretty normal, and basically indicates that my pain is nerve related. And so, she recommended I have a nerve block by my pain doctor. It just so happened that the doctor who is in practice with my pain doctor specializes with pudendal nerve blocks, but he is out of the country for a month. So, I went ahead and had my pain doctor do it on 7/31. Even though I only got 2 hours of relief, according to my OBGYN, that is a positive diagnostic result, and she wants me to have another one. She said it may take a series of them. My pain doctor has performed two other procedures on me - a Caudle Epidural Steroid injection, and a Ganglion Impar Block, using only the anesthetic Bupivicaine, because it's longer acting than Lidocaine. I received about the same amount of relief with both procedures - 2-3 hours. The goal is to obtain enough relief to calm down the nerves to prepare for physical therapy.
Sorry to be so long winded, but wanted to share as much info. as possible with you. I use ice packs all the time, even when I'm driving, and a donut-hole cushion. The best positions for me are sitting like a cowboy (spreading my legs out relieves some of the pressure), and lying down. When I first wake up, I don't have any pain, but it doesn't take any time at all before it starts to flare. Bending over makes it worse for me. I'm not a quitter - I'll keep doing whatever it takes to get any degree of relief. I do wish you all the best and hope that you get the right treatment for brighter days ahead!!!!!!
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I will continue with my male physio, he is pretty confident in the work and he says my muscles are loosening quite well, if the pain persists after we are done I will contact the female physio but hopefully I wont have to. Thanks for your suggestion! greatly appreciated
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