New and Confused

[lenore]

Hi everyone,
I'm Lenore and I've been reading the site for a while, so many stories and what people go through is amazing. My symptoms started a year ago today seemingly out of the blue and overnight and what a horrible year it has been. Symptoms are frequency (presenting major problems with sleep), vaginal and clitoral pain and burning/stabbing pain and numbness/pins and needles (presenting major problems with sex--clitoral pain is the worst! feels constantly engorged/burning), pain is almost gone in the morning but gets worse during the day (presenting major problems with daily activities and parenting), pain with touch, ie I can't sit at all or wear pants (presenting major problems at work and driving)... and I feel hopeless. Diagnosed with vulvodynia, pelvic floor dysfunction (was told my pelvic floor was extremely tight with muscles very large from overuse), and interstitial cystitis (but no ulcers seen in the bladder). Seen gynecologists, urogynecologists, physical therapists, rolfers, acupuncturists, chiropractors, osteopaths, and had botox injections into the pelvic floor, steroid injections around the pudendal nerve (worked a miracle for 6 weeks, then pain returned), bladder instillations with Heparin, tried various antidepressants (made me insomniac/gave me seizures) and Valium (don't want to become addicted and it stopped working anyway), various numbing or antidepressant creams, estrogen cream, the IC diet (starving! no wine, no chocolate, and no sex, what is life for!?), a year of weekly pelvic floor physical therapy, and the infamous "relaxation cure" along with psychotherapy to root out any unconscious mechanisms and also for support and no one can understand what is wrong with me (no unconscious mechanisms discovered). All blood, urine, and skin tests were negative. I also have scoliosis with a rotated and twisted pelvis and one leg longer than the other, it's a significant curve, and the right hip "goes out" or becomes very weak and won't support me when going up stairs, which started with pregnancy. Aside from the steroid injection around the pudendal nerve, the one thing that has helped is when the physical therapist releases something in my left glute, maybe it's piriformus as that is extremely tight and rotates my leg. But that lasts a moment and when she lets go, symptoms return.

And beginning to think I may have PN but not sure how to get diagnosed as the doctors I have seen so far have not suggested this, where to go, and what hope is out there. I can't diagnose myself and I know people here can't either, but the burning pain, clitoral pain, and the problem with sitting made me consider PN as possible.

I'm so tired of doctors and have spent thousands of dollars in the last year. I'm finding it very hard to function as a wife, mother, and employee and am not looking forward to another year like last year, let alone a future like this, it is unimaginable. Any support would be welcome. I have read many of your stories and marvel at what people go through in life! Some seem to have found relief through surgery. I don't know where to begin.

Thank you everyone,

Lenore

[Roger]

Hi Lenore,

Yes it sounds like your PN is irritated as that is definitely the nerve that connects to your clitoris and other bits.

But moving on to your hip and one leg shorter than the other. That is a classic symptom of SIJ (sacral Illiac joint) alignment problems. Have any Oesteopaths told you this and/or put your SIJ back into alignment? If they haven't I would be asking why!
Because that is one of the first things you need to resolve imho. Having had it put back you may get some relief from some of your problems. It is not a one day fix because if it's anything like my SIJ it comes out every so often and irritates something pdq like my Piriformis and a few other pelvic muscles.
A misaligned SIJ they say can close down Alcocks Canal where the PN and Piriformis run through it and irritate one or both.

My theory is that PN is a mixture of muscle and nerve problems. Something that imho doctors are fairly useless at dealing with as all they want to do is drug, jab or cut! None of which is likely to cure.
I think you have to fix the muscoskeletal problems first using a variety of methods. Some work differently depending on you - osteopathic realignment, acupuncture,sports massage, stretching, strengthening core, either relaxing the PF or strengthening the PF, yoga, mediation and finally the one thing everyone else will tell you to stop apart from me......exercise to keep it all working properly.
Nerve problems are hard to cure as nerve takes a very long time to heal. But if the nerves get stuck inside their sheath with scar tissue and inflammation because they can't move and we don't do something about it then it becomes a Catch 22 that is highly likely to cause muscle spasm.

This is a long haul and may require a change in your lifestyle

Roger

[lenore]

Thank you for this idea, I will definitely mention the SIJ to the osteopath when I see him next week. I know when I was pregnant it was an issue so that could be a key. I know some people say not to exercise if it's PN. I have significant weakness in the glutes and abs from pregnancy and umbilical hernia repairs so have been working with a trainer who seems aware of how not to overload the pelvic floor, no weights, just a few static yoga poses for the core and a few stretches. The theory was my pelvic floor won't relax until it doesn't have to do all the work for my inactive and weak core. But I am nervous about PN and exercise. Other lifestyle changes from what I've read in this site seem to be hyperavoidance of sitting, and using a cushion. I try to lie flat at much as I can and sit on a cushion or stand at work if no one is around. Sitting is a huge trigger for me I really can't sit more than 20 minutes, I have not been able to drive to many places anymore becuase I can't sit that long. And I'm trying to do a lot less physical labor, less picking up toys and vacuuming although that's not easy either! It sounds like you've found ways to manage the lifestyle changes and also an osteopath who is able to help, and things are better for you Roger? I would love to avoid more injections or surgery and drugs seem to cause me so many bad side effects.

Part of what I'm confused about is how to know if my problem is really structural, like the muscles are just weak and/or overtightened (I know my left piriformis is very tight) and so are "pinching" the PN and I can correct that if I continue the PT and gentle training and rolfing, which has helped even out my pelvis and scoliosis a little but over the last 6 months... or how to know if none of that is really the issue and I need surgery because the nerve is entrapped by scar tissue or something that exercise can't reach. And from what I've read here it's important not to let it go on too long, and it's been a year, albeit a year of trying everything I could figure out to try to help it.

Has anyone worked with Dr Dena Harris in NYC? I didn't see her listed anywhere here. She is Dr Coady's partner in NYC, Dr Coady seems no longer to be practicing. Dr Echenberg is also not too far away but when I requested his materials a few months back I got scared he was more the "it's all in your head, just relax" type because he works with a therapist etc, and I couldnt tell how skilled he is with injections or surgery if I should need that, he seems more focused on treating the pain than fixing the problem, but that's just my sense from his web site. Anyone have experience with Dr Harris or Dr Echenberg? I saw someone had seen Dr Echenberg in another post.

Thank you so much! It helps just to have people to bounce things off of, and not to feel so alone. I've found it hard to know what to say to people about why I'm in pain, what hurts, why I can't sit down. Nice not to have to explain that.

Lenore

[janetm2]

Lenore, The SIJ is a definite issue I have had since my surgery in May 2011. It takes a long time to sort that out and the core strengthening is part of it I do exercises for that and did water therapy for 6-9 months last year. Also, my husband learned an alignment technique and connective tissue release for my stomach, thighs and glutes that he does twice a week and is helping to keep things in check. SIJ and the tight pelvic floor could be your issues but the only people that can help diagnose entrapment are the PN doctors. I thought Echenberg was more helpful per another post but I have not seen him. You can try to search in the text box at the top right corner for Echenberg and Dena Harris to see postings. Good luck.
Janet

[Violet M]

Lenore, what Roger says makes sense -- that possibly your problem is musculoskeletal due to the fact that you get temporary pain relief when you are in the right position. Is your pain more on one side than the other? You might want to consider seeing a manual therapist who uses the Hesch method. You could send a private message to Hermajesty on the forum -- I think she posted the name of a good manual therapist in the NYC area. Or you could contact Jerry Hesch to see if he can refer you to someone there. I think you can find his contact info on our list of PT's.

Violet

[HerMajesty]

Hi, Violet mentioned PM'ing me as I am almost never on here any more (due to feeling much better and becoming busy with other things) - but hey, I showed up and happened to see this. I got interstitial cystitis at age 14 from a very similar pelvic injury: complex twisting of pelvis including 1 leg 1.5 inches longer than the other. Although I wasn't pregnant, this type of thing is more likely to happen during pregnancy due to hormonal laxity of the joints. At the time, 1980's, I was told IC was autoimmune so my SIJD went undetected for 25 years. It was finally diagnosed when I was looking for answers regarding the PN, which didn't start until after my 2nd pregnancy and birth. By that time I had a very bad case of pelvic floor dysfunction and other more complex pathology (tarlov cysts of the spinal nerve roots)...but if your pain experience has been relatively brief compared to 25 years, there is a chance that correction of the pelvic injury would solve the problem. Pelvic floor PT would be a good step to take AFTER the pelvic injury is corrected, but a rather fruitless step to take beforehand, because you are not going to have any lasting effect on the muscles if they are being constantly strained and dragged by the twisting of the pelvis.
Who you need to see in NYC area: Robert Shapiro at Gold Coast PT, http://goldcoastpt.net/staff/huntington/ . Yes, I know he is probably a couple hours out. You will not find anybody closer who can fully correct SIJD. You will only have to go a handful of times - maybe 2 to 5 visits total. I strongly suggest you do it. Even if there is other pathology once the SIJD is corrected, pelvic injury was most likely the 1st step in the disease process and must be resolved 1st before other meaningful progress can be made.
Meanwhile, a couple of lifestyle pointers: I lived quite well with IC for over 20 years with no meds or medical intervention by drinking obscene amounts of water. Never used the IC diet, my urine was probably too dilute to be subject to food irritants anyhow. If you experiment with taking in a lot of water rapidly, and holding it as long as you can before voiding, you might notice that voiding with a fuller, stretched bladder and stronger stream is much less painful than voiding due to the false sense of IC urgency, dribbling from a mostly empty bladder, and having your bladder go into spasm as it empties. If it works, you will be motivated to slam more water after each void - goal is to always have a truly full bladder before urgency strikes. Between my initial diagnosis almost 30 years ago and now, docs have discovered multiple hydrodistensions under anesthesia give relief to some IC patients, which is ridiculously invasive IMO because my (water) drinking habits self-distended my bladder many times over without medical help. my bladder capacity was almost nil when I was a teenager (less than 150cc's) and is now close to 1500 cc's. Drink (water)! Also, as far as trouble wearing pants, when I was at my worst I was wearing men's boxers under skirts or Merona men's PJ pants from Target with no underwear, which can pass very nicely for ladies' slacks if worn under a long shirt.
Hope some of this is helpful.