Health Organization for Pudendal Education

Hello: I've posted a few times and I guess whatever I'm doing or saying is either not getting through or no interest. I will try to state thing's simply. history- pelvic surgeries for either cysts, endometriosis or adhesions 5 times since 1986. then total hysterectomy with bilat. ooph. in 2004. since then 3 more surgeries for pelvic pain due to severe adhesions. Nov. 2009 started with pain while sitting and also redeveloped pelvic pain. I finally after every Dr. and test in the book being negative.,started reasearch myself and was convinced it was pudendal neuralgia.may 2010 diagnosed with pudendal neuralgia with entrapment of the right side by Dr. Conway(thank you Dr. Conway) Since then I have had a total of 5 nerve block's with Dr. Quesada and continual changes of medicine so I can try and stop the stronger med I take. I was on zydone 10/400 for many month's. I also went to PT and sometimes I felt great and other times I felt worse. I finally asked my pcp who is aware of all that is being done to decrease my pain med, starting with a 750 dose. the zydone was working. well sometimes the vicodin es helps and sometimes I feel like I'm taking candy. I have been started by Dr. Q now on gabapentin and a gaba/baclofen suppos. prn.also I am wanting to try accupuncture and have found a few not far from where I live that are on the medical board of accupunturist's. I have decided to stop PT, at least for now. I was beginning to feel like I was on a rollercoster going nowwhere. Does anyone know if the accupuncture is a good choice(several of the comments looked good)also, I am trying to master meditation and do find listening to calming music helpful. Please if anyone has answers or suggestions. I have pain every day(like a lot of you) and I was doing better and know I feel like I'm sliding downhill. I believe my family and friend's are sick of hearing about this. I just want to get control of this thing instead of it controling me. thankyou; Janmar53

Hi Jan,
I responded to your post about going to a PT who wasn't listed on this site. I didn't notice a response from you, though. It seems that you gave PT a good try and it makes sense that you wouldn't want to keep doing what isn't working for you. I did intense acupuncture treatments for several months and was able to get rid of the myofacial pain I had. However, it wasn't effective for the nerve pain. How did you leave things with Dr. Conway & Quesada after your nerve blocks? If you have entrapment, I'm afraid all the PT and meds in the world aren't going to be very helpful. Are you considering surgery? Would it be at all possible for you to have an MRI with Dr. Potter in NY?
I'd love to help you in any way I can. Please let me know what you're considering for your next steps.
Warm regards,
Karyn

Hi Janmar -

I've had a degree of success with acupuncture. I had ten sessions in all, through the NHS. It did help at the time, but the treatment needs to be ongoing, and I cannot afford private treatment. However the acupressure needles that I now use are useful when I get a spike.

One other thing that you might consider is a course of CBT, over here this is available at GP surgeries through the NHS via the local psychology service. I have found it very helpful indeed - in fact it has been my single biggest help, other than lifestyle changes.

I also use a cushion - Togu Air Active Cushion - which I got from Amazon, this is really helpful. I don't sit without it.

I hope that things improve for you - you have a good attitude, I think! It is all about management for me, too.

Calluna/Mod5

I am going back to my accupuncturist for another try in two weeks. Since the PT's say my pelvic floor is constant spasm and never relaxes we are going to focus in on that. The traditional, chinese method, would have me seeing her every day for a week, but we are going to start with two days in a row and see what, if any relief I get. She has been willing to research anything and everything I have asked of her. I started with her last May I think when all we knew was I couldn't sit and was having vulva pain. With each new "idea" (hate to say diagnosis because most have been incorrect, I would call her and she would try something different. Hopefully we are narrowing in on the real isssue at hand and at a minimum she can help me relax these muscles.

when I went for acupuncture, it calmed down all of me except my nerve. but they didn't know where to put the needles.
I am surprised it helped some people... and well, I guess in that case it's worth a try for you to see for yourself... for me, it was not really worth more than just resting in a pretty room with music... and that was relaxing.

i wonder if your problem stems from the surgeries causing adhesions for you or just adhesions forming around your nerves due to your body tending to create adhesions anyways.

what are your symptoms, how long can you sit? does intercourse hurt? urination/bm problems?

Hi all; Thanks so much for all of your suggestions. i have had so many surgeries for adhesions that I am sure that is adding to the problems. At one time the PT was working and I was seeing a great difference. Now some day's are fine others make no difference. I try every day doing meditation and any other methods that help me to relax and deal with the pain. I (like so many of you) blame myself for this. If I had never had all the gyn surgeries over the year's( many of them for fertility reasons-due to much cost and no avail.)this would not be a problem. I have finally decided it is time to seek professional counseling. I lost my job. I live with pain every day(as many of you) and I hate relying on the strong meds, but they are the only thing that really work's for the pain. I try to keep busy and walk every day. I do not want surgery and will continue to explore every possible avenue(including alternative medicines)I just want as much of my life back as I can get. I do sit on a special pillow and try to remember not to do anything that upsets this, except, I have found that stress does a number on me. I refuse to feel sorry for myself and I believe my family and friend's are sick of hearing about this. I cannot afford to go to other doc's, but I thank you all for your suggestions and help; janmar53

Mod5 wrote:
One other thing that you might consider is a course of CBT, over here this is available at GP surgeries through the NHS via the local psychology service. I have found it very helpful indeed - in fact it has been my single biggest help, other than lifestyle changes.

Calluna,

I'm curious about your experience with CBT. Could you please elaborate, either here or in another thread? Thanks.

Hi Lernica - sorry about the slow reply, I have been away from home for a couple of weeks with limited net access.

I am happy to talk more about CBT. I have had quite a few one to one sessions with a psychologist via the GP psychology service, and she sent me off to attend a 6 week course on CBT as well. This course was also available as a single whole day course, but I was told that the 6 week course tends to produce better results - there is a lot to take on board, and time between sessions is helpful.

CBT teaches you to deal with stresses in your life. Stress can take many forms, including pain. It is based on the fact that our feelings (emotional feelings), our physical state, and our thoughts all influence each other, and are closely interlinked. If any one of these is affected, it can change all the others. It is the foundation of the old fight-or-flight thing, with which we are all familiar I am sure. But we can use this, and this is where CBT comes in. It involves a conscious intervention.

For instance, to give a very simple example, when I get a pain spike, I try to stop and think about my breathing. Invariably I have started chest breathing, rather than diaphragm breathing. It is an automatic reaction to stress. If I then consciously alter my breathing, this alters how I feel physically. Also, of course, the pain is no longer in the forefront of my mind. There are other things as well, obviously. Another example is becoming aware of negative automatic thoughts, understanding and dealing with them - this I did find difficult, it took some practice but it has been very helpful when I get a bit down.

Also, it really helped me with acceptance. At the beginning, acceptance seemed to me to be the same as giving up. CBT helped me to realise that it is not, instead it is a very positive thing and the first step in managing the whole thing.

Of course, it does not make the pain get any less. But it does make dealing with it a whole lot easier.

I am open to complimentary methods to cope with the pain associated with pudendal neuralgia. I have tried several of them (meditation, hypnosis, acupuncture etc...) and for me those methods did work quite well up to a certain level of pain but above a set threshold that I crossed a few years ago unfortunately, I found those methods not effective anymore. In other words and in my experience, moderate pain can be controlled by non-invasive methods but severe pain is virtually impossible to deal with without strong medication.

I agree, Ezer. I've tried everything mentioned. Only strong meds help strong pain.