As I read through the posts I see a lot of good people living in agony. Each one of us with our own story of chronic pain. What I don’t read are post of hope and successful recovery. I’m sure those who do find relief move on and put the past behind them. Would anyone like to share (if there are any) stories of healing and recovery. Has anyone returned to a normal life after dealing with pudendal or pelvic nerve pain?
Success Stories : As I read through the... - Pelvic Pain Suppo...
Success Stories
Written by
Jev1972
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42 Replies
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Well, I have had some success. I suppose if it were completely cured I might not be using this site anymore, which I guess is the reason we rarely read success stories. I’ve had over a decade of pain with various diagnoses, including urethral syndrome, vulvodynia and an unofficial diagnosis (Physio only) of pudendal neuralgia. I’ve been having Physiotherapy for almost 3 years and when I think back, it’s clear that I have significantly less pain than previously. I’ve been seeing my current Physio for almost 2 years and between us we have gained a better understanding of the origins and triggers for the pain. Through gentle exercise such as yoga, combined with meditation, I have become much more aware of minor sensations and this has helped the Physiotherapist to find the internal areas that correspond. I have managed to reduce my medication and with the support of the Physiotherapist I have a GP appointment to discuss a new plan that would include working towards eventually coming off gabapentin completely. Small steps, but I’m getting there. My advice would be to be patient, but never give up. We only have one life and we owe it to ourselves to live it to the best of our ability. Good luck to everyone.
Thank you Joolibee. What was your beginning pain level and what is your average daily pain level now?
Good question charlee4. It’s been such a long journey it’s difficult to remember exactly what my pain levels were, but they tended to build up as the day progressed and be at their worst in the evening. I remember being in tears nearly every evening because I could not find any relief and could not escape the pain, so it was pretty high, because I don’t cry easily. If any professional examined me, I would suffer a massive flare up that could last for days or even weeks. Now, I would say it rarely gets above 3 out of 10 and there are days with little or no pain. Also, if it does spike a bit during the day, I can usually get it to go down through gentle movement.
How did you cope with physio and flares? I just had my first internal this morning and I am in a concerning amount of pain. No one told to to expect this.
Ah, yes it can provoke a flare up initially, but it should not last too long and in my experience it gets easier over time. Sometimes now I find that the internal work actually eases the pain, but my Physiotherapist always advises me to keep a diary of my pain after and between treatments. It can be a case of trial and error until the Physiotherapist is able to identify the problem areas.
I don't know whether you are still on this site or not, but thanks again for your comments. Did you ever have injections or anything other than meds and physio even early on?
Hi. Yes, I had two pudendal nerve block injections a few years ago. The first caused a massive flare up then subsided to just how it was before. After the second I didn’t have a flare up for 6-7 weeks, but that wasn’t good enough for me to want to continue. I found the process both painful and undignified. That doesn’t mean that it’s not right for others though. We are all different. I’m currently looking into mindfulness as a means of pain management, but it’s early days yet, and the thing with mindfulness is that you have to let go of all expectations.....not easy.
Thanks for your reply. Did you mean after the second nerve block you had 6-7 weeks of pain relief, but....Do you have record of the type of injection you had? What kind of steroid? The records should show the type of steroid he/she used the amount and the area he treated with the needle. I am sorry I am asking many questions. I really do appreciate your answers.
Sorry, I don’t know what type of steroid was used. I no longer attend that clinic. I wasn’t pain free after the second injection, but I had no flare ups for 6-7 weeks, which was good in a way, but not good enough as far as I was concerned. The nerve block wasn’t ct guided and I’m not convinced it was done in the right place. It was a gynea clinic and the injection was given vaginally, but in fact I also have pain from my sacrum, coccyx area and rectum. I’ve often felt that I was banging my head against a brick wall as far as the NHS was concerned, which is perhaps why I started to lean towards alternative therapies.
My pain is primarily rectal and and involves the sacrum, hips, groin, thighs and now my vaginal area is effected. This is 13+ years of trying most everything I have heard about. I haven't tried the McCoid exercises. What do others think who have tried these exercises?
I have been doing these exercises for a few months now and they helped a lot. For tight muscles dct workout is the best, but you gotta commit daily for a year.. and I think for those whose PN is purely of muscle origin it can be a cure. I had a pelvic surgery unfortunately.. so I am not sure I will be totally cured, but these classes helped a lot. Talk to David, he will talk you through the process
I just started the course... did you do the monkey bar part?
Yes I try doing it daily, its a very important excercise and I feel the difference.
Yes, I,ve also had significant improvement, although I am not cured, I don,t realistically think I ever will be. I have been able to regain a good part of my old life, still use cushion and small amount of medication.
I have achieved this by doing some of David Mc Coid excercises, I have suggested these to quite a few other people, who don,t seem to have had any benefit, which goes to show how complex this condition is, however having tried everything else other than an implanted stimulator, which I was offered at Bristol, I am very grateful that I am tons better than I used to be. I am now ten years down the line with dreadful condition.
Regards lucy
That's wonderful! We're you ever given any diagnosis close to named condition? The Mayo Clinic put mine as pelvic neuralgia. It took a very long time to even get to that point.
By the way, if you want to read my posts, it will make better sense because an additional chronic pain arose which I thought was all all together. But, Mayo Clinic said it was two different issues. By the way, I think after not being on the site for.a while, I may have created another one and have two since I had problems trying to remember my username. Consequently, there may not be anything about my background here. Ihave to find out!
It is wonderful to hear about success.
Lastly, I began going to a therapist an hour away for treatments. Unfortunately, there was a bottom to the money. after spenting so much on many, many doctors, specialists, MRI'S and tests galore.
Unfortunately, I had to stpp
after a very short time (maybe 3 months once a week even though they wanted me twice a week). ven though my insurance was pretty good, my copay rose to one-hundred dollars each week.
Had an sensor inserted in me last week to test my pelvic floor tension, it was 7, normal should be 2 to 3. Just can’t figure out how to reverse the tension in my levator ani.
Hi Jev I also have very tight pelvic floor muscles and you need to go to a Physiotherapist who specialises in pelvic pain because the first physio I went to said I had to do pelvic exercises to tighten my pelvis!!!!! when I got worse and got a referral to a different physic and she couldn't believe the report from the 1st one and said my prognosis was completely opposite and things are gradually getting better.
Well,like Joolibee, I've had well over a decade of pain,so I've probably been through all the system. I probably am not quite as optimistic though.
Recently I was reading about woman's Physiotherapist and what they do,now this is like a last chance,but I chatted with someone on here about it,and as luck would have it her Physiotherapist recommended me one.
Ok I'm paying private,but if it just halves the pain I'm in at the moment I'll be happy. I must say this is about the only person who understands what's going on with me. She said it would be a long job,because I have other health issues. But if she can give me a better quality of life,in my last years,I would be grateful. I would recommend anyone to see a good Physiotherapist. Just wish I had found her years ago,then my body may not have been a canal still with algee ,it would be a flowing river clean and pain free. Them were my Physiotherapist words not mine,but makes so much sense. Good luck to you all🍀 And yes it would be nice to hear of success stories.👍
Jev1972• in reply to
Keep at it Gemini, Im determined to get my life back!
• in reply toJev1972
I will I'm definitely not a quitter.
lucyp• in reply to
Yes,
Please keep searching, I think the answer is out there it's just finding or stumbling upon. I wish everyone with this horrible condition, all the best.
Regards,
Lucy
throughout my ordeal, i think what was the very worst was not having a sensible diagnosis. not knowing the problem and the individual specialists not talking to each other.
do i eat more fibre.
do i eat less fibre.
do i stop going to yoga as maybe i have a prolapse and would make it worse.
should i stop having any alcohol.(2 years i tried that)
should i stop eating dairy, wheat, soy etc.
should i drink hot lemon juice to shrink a kidney stone.
should i get my uterus removed.
or is it just gas.
it goes on and on.
so trying to become more informed from dr google causes even more uncertaincy as we are informed that there is a lot of stuff squished together in the female pelvis.
Could not agree more. We all want to be our own advocates, no one else will be so it becomes a puzzle... just trying to find that missing piece.
• in reply tolucyp
Oh I will stay with this Physiotherapist,I definitely think she's the best person I've seen,and so simple. I think the key is to have faith in whoever your seeing,otherwise your wasting your time.
My Daughter in law is a good example,she had a bad back,she was seeing a Specialist who said he would like to operate on her,she agreed but she was frightened,so I asked her if she had faith in the chap,she said no,but went along with it,twice. She's now classed disabled,and no one will touch her now. She's only 43yrs old and walks like a 90 year old,and her life is ended,she can't do anything.
Sad very sad.😥
Joolibee• in reply to
I wish you luck Gemini. Like you, I would also recommend anyone suffering from pelvic pain to find a suitably trained Physiotherapist. Unfortunately, NHS provision is sparse, though I think it is available in places. I see someone privately. I save a bit of money by paying into a scheme that allows me to claim back 50% of the fees. It took me a while to find the right Physio, but she’s worth her weight in gold. My pelvic muscles are not in bad shape now, but there are other issues linked to scar tissue and the sacro-tuberous ligament. I never would have, found this out without the help of a good Physiotherapist. I would add that, in my view, a healthy diet, relaxation and gentle exercise are also important.
• in reply toJoolibee
I totally agree with you. But it is early stages with me just at the minute,but I have a lot of faith in her. Just wish I had seen her years ago.
DCleary1953• in reply to
These therapist s ied to joolseem to be far and in-between. I repliedto joolibee regarding my experience.
I suppose I may luck up and have an opportunity to get back. I.am officially a senior citizen this month!!
Yeah, I am thankful to
have made it this far! !!!!
Seriously, with Medicare and
additional insurance,.it could all be covered. Good luck.
• in reply toDCleary1953
Oh I've been a senior citizen for some time.🙄. But I've spent years trying to help myself,and I'm putting all my faith into this Physiotherapist I really think she knows her stuff. Anyway I also think I've come to a dead end now sofingers crossed🤞All my hope is on her.
I've had success. 5 years ago, I started having occasional "bladder pressure". It would last a day or maybe 2 days, and then go away. I asked my gyn. about it. She thought it was low estrogen. It was not. A year or so later, I went to a new gyn. She thought it was an enlarged uterus. It was not. Fast forward 2 years (2016), suddenly I had this feeling of "bladder pressure" 24 hrs a day 7 days a week. **I have seen no less than 6 different gynecologists in 5 years regarding this issue, and all but 1 have incorrectly diagnosed my problem.**
Finally, I took myself to a urogynecologist (after doing a Google search for symptoms and help). She poked and prodded, and said my pelvic floor muscles were very, very tight. She suggested I see a pelvic floor physical therapist (physiotherapist) and prescribed Flexeril. I made an appt. that week. I saw this PT for 9 mths. She ended up discharging me because she said she could no longer do anything to help me. I was about 50% better.
I went to a new gynecologist who, again, misdiagnosed me (with infection). Then I started doing more research for a new pelvic floor PT. I found someone near-ish to me. I started seeing her about 14 mths ago. She suggested a different gynecologist in our area who knows a lot about pelvic floor pain. I started seeing her. She suggested I see a pelvic pain specialist.
Between the 3 of them: gynecologist, pelvic floor PT, and pelvic pain dr. I am about 100% better.
I take Desipramine daily (100 mg) for nerve pain-- that started soon after I started seeing the 1st PT. I take Flexeril as needed (currently I take 2.5 mg daily, which is barely anything). I was seeing the new pelvic floor PT once a week. Now, I see her twice a month. And we are expecting me to go to once a month, and then only as needed.
I cannot stress enough how finding the *right* medical professional (the urogynecologist) has helped me. She, finally, correctly diagnosed my problem. This led me down a long and winding path, but I've finally got the *right* pelvic PT and *the right* gynecologist. My PT is incredibly knowledgeable and caring. And, I am so grateful for this little team I've put together!
LB
What do you think cause your tight pelvic floor?
The working theory is years of stress/anxiety, as well as trauma experienced when I was young.
I think I can post a story very soon in this thread 
Do tell
Anything?
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