Health Organization for Pudendal Education

I dont know where to begin. I guess ill start with a synopsis of my history & any piece of advice is greatly appreciated. All the medical providers ive seen which is over 20 dont have any answers for me. It all started when i got married & tried having intercourse. The pain was unbearable. I became preg & things got worse, the pain became constant & worse while sitting. I started pt which gave me minimal relief. I then gave birth which was a vaginal delivey,from then on i got excruciating hip & lower back pain. My vaginal pain got worse so decided to see a vvs specialist. after seeing one that was terrible i decided o go to Dr Goldstein. He told me that i have vulvervestibudynia 7 the only solution is a vestibulectomy since my nerve abnormalty is bout30%. I wen to % other dr & each of them agreed.My therapist believed that it could be pn even b4 surgery cuz i got pain every time i squatted. She sent me to D. Chappman. He did a series of sacral nerve blocks. He stopped after 3 cuz he felt that they gave me so little relief& the risk wasnt worse it. I had my surgery in March 2012. The vestibular pain has gotten a bit better but my other pains have gotten worse like my hip, lower back, vaginal & bladder pain. Amy Stein from bb has been treating me & after seeing that pt wasnt helping me said it might be pn. Dr goldstein didnt want to hear bout it but Amy seemed to convince him when he saw that everything else failed. He did vaginal nerve blocks,put me on neurontin cymbalta oral valium & tried botox.None has helped. My bladder pain is unbearable-the burning feels like s/o has set m vagina on fire.Im seeing Dr Moldwin for this. He wants me to try lyricia,periduim & compound cream amitriptyline/ baclofen. My pain has gotten worse with sitting & im just in pain all day long. I want to see the end to this pain already. Im still in pt for maintenance, i get worse if i dont do pt. At this point Im looking into pn cuz this seems to include all my symptoms. Is there any permenant treatment for pn? Any advce is greatly appreciated. I might of left out some details but this is the most of my story.

Welcome and sorry you are not getting any relief! I wondered if your nerve blocks were guided and they really hit the nerve? This generally helps with diagnosis and possibly figuring out if you may have an entrapment or just PN. Not that eitheris great as noted. I had PNE and decompression surgery and was just switched from neurontin to lyrica with addition of fentanyl patches and my pain lwered. I started a similar ( more ingredients) compound cream some months ago and it helped so the suggestions you are getting may be worth a try. We are all different but I know others have also done better on lyrica than the neurontin. Threre are various treatments like neurostimulation pain pumps and ESWT by Dr Andrew in Canada or course because we are all different also various outcomes. I am hoping others will have ideas of things to try or even other ideas on what may be wrong besides or in addition to PN, sorry to say there are sometime multiple problems but then fixing one could make a difference. Good luck.
Janet

I am wondering if your initial pain on intercourse might have been due to vulvar vestibulits, but the continued pain after surgery might be due to a pelvic joint injury. Pregnant women are more prone to such injuries, because the hormones of pregnancy soften the pelvic ligaments so they can expand for pregnancy and birth. Amy Stein is known to be an excellent pelvic floor PT, but this is not always the best specialty to seek out for evaluation and treatment of the bony pelvis. I am assuming you are in New york since you are seeing Amy Stein - strongly recommend you get evaluated for sacroiliac joint dysfunction (SIJD) here: http://www.goldcoastpt.net/#! . Ask to see Robert Shapiro. he is a Sports PT but often this is a better specialty than pelvic floor, for evaluating SIJD. It's noninvasive and not an "intimate" exam like you would get with a pelvic floor PT - it just takes a single exam to ascertain whether joint injury involved, and if so a limited number of treatments to correct it. It is not meant to replace the PT you are already getting, but might greatly augment it.
There is the possibility of nerve entrapment and need for surgery, but the above is a conservative measure to check into 1st.

Thanks for the responses. My nerve blocks were guided but only one got me very minimal relief so dr arent very optimistic i should try it again. Right now im not being treated by Amy just one of the pts who used to work in Beyond Basics. One queston if ive had emg & a biopsy by a neurologist both were perfectly normal can i still have this sijd? Any more insight is appreciated.

Yes. sijd actually stands for sacroiliac joint dysfunction which is kind of a misnomer, because the sacroiliac joint is not the only joint that can be injured in the pelvis. It's just kind of a shorthand way of saying that the pelvis is misaligned or that a joint does not have proper range of motion, someplace in the pelvic area. For example a common source of problems for pregnant women and / or women who have given birth vaginally is symphysis pubis diastasis, which is a widening of the joint which holds the 2 pubic bones together at the bottom of the pelvis. problems can also originate in the hips, the sacroiliac joint, or in the way the pelvis is oriented in relation to the sacrum and hips (it can kind of be twisted). This is not a primary problem with the nerve. rather, it is a structural problem that stretches and twists various pelvic soft tissue structures: Nerves, muscles, tendons, ligaments, organs such as the bladder - and can cause a general pain syndrome in the pelvic area. It should always be suspected if your pelvic floor muscles are chronically tight and after they relax in PT, they just tighten up again over and over - this shows there could be a structural problem causing malposition of the pelvic soft tissues. Of course I am not by any means certain this is the problem; but it was part of my problem, and I got a lot of relief when it was corrected. Being checked for SIJD is a conservative measure to take before proceeding with anything invasive.

Hi there painfree2b, welcome,

You do seem to be in good hands with the type of treatment you have been receiving. Everything you have had so far is probably what I would have suggested anyway, it is just a shame it has made no great improvement, especially the nerve block. Did you get no relief at all?
I think the other advice offered above should at least be checked out, although I must admit that I have been told by a number of physio's that my pelvis is up and rotated and therefore have one leg longer than the other. They 'fix me' but I just feel exactly the same??? Of course we are all different so being realigned if you find there is a problem there won't do any harm of course.
A friend of mine had a similar problem after having 3 children and wore a scaroiliac belt to help the stretched ligaments stay in place, it did work for her but her problem was more an ache and not a nerve pain, You may be able to ascertain whether something like this would help the problem if you see the person HM has suggested.
Take care,
helen

Thank hermajesty for making it clear. This is exactly whats happening each time my pt releases the muscles, its seems to tighten not too much after that. Ive been realigned many times but each time i return my pelvis moves out of place. I wore the belt during pregnancy & actually got a diff one after the baby none seem to give any relief. My pt has taped me but it didnt work either. Only one nerve block seemed to of given very minimal relief for maybe 2 hours so they dont consider it to work but cant rule out pn cause of it. Does it make sense that the past 2 weeks after pt my pain has intensified while sitting & gets better once i start walking?

I was also realigned many times and my pelvis moved out of place - but it was not that my pelvis had true hypermobility. There are a small number of people with connective tissue disorders that have true pelvic instability - usually these are the same people who can bend a thumb back until it touches the wrist or dramatically hyperextend the elbows. If you don't have a connective tissue disorder, then the culprit is probably the method being used to realign. I started with leg length discrepancy and my PT worked for 4 months on realigning my pelvis and strengthening the surrounding muscles to keep it in place, but it would not work out. She finally referred me to an expert in Manual Therapy here in Nevada, who permanently realigned my pelvis with brief treatment because the methodology was different. This is why I recommend Mr. Shapiro, because I know something of his technique through networking and think of him as one of the few PT's scattered around out there who can properly align a pelvis. Lots of PT's make an effort at it, but very few make it a primary focus of their practice, to the point where they can deal with complex patterns of pelvic joint dysfunction.
Helen, I feel so bad when I hear about this in the U.K., because I know of a few expert SIJD practitioners in the USA, Peter Dornan alone in all of Australia, and NOBODY in U.K. Doesn't mean there isn't anybody, just that if there is, i wish I knew who!
Sitting is generally the worst for pelvic pain, and yes some of us do get relief from walking although others have issues with walking as well. Everybody's pathology is slightly different so as far as position and activity level, listening to your own body is always best.