Health Organization for Pudendal Education

Hi, sorry my story is long and complicated and not sure if this is PN or PNE or anything to do with any of this. My story starts 17 years ago when i was 21 i went skiing and fell on my ass all day. woke up with pressure around my anus, and anal sphincter sensitivity. went to dr's no one could tell me anything, i thought i injured myself and it will eventually go away. It was 24/7 for 11 months. It did go away and life was normal again until 5 years later. I was working at a sit down job for about a year and all of a sudden i felt something funny, within hours i new it was back. I couldnt sit pain in my anal sphincter was so bad and the pressure around anus was horrible again it was 24/7 unbelievable pain and depression set in and that time death was looking better and better. Went to every Dr. you could think of. From Protologists, GYN, Chiro, had a ton of MRI's it was so bad i had just gotten married and i already wanted to die and felt bad that life was like this for my new husband. So long story short 2 freaken years later the pressure and pain gone again. Went on with my life. Had a son and then had another and when i went to have my third son 5 years after the 2nd episode guess what it came back, 2 todlers and now a newborn, started all over again depression pain anxiety you name it. I didnt want to see anymore Dr's thought this is my life and i will deal. But internet got the best of me and i found this site, talked to a few ppl who told me to go to CA and see Dr. Weiss, I was about 8 months in with this when i went to go see him. He gave me nerve blocks but didnt do much for me. Within months of seeing him it was gone again. Here we are 6 years later, and guess what its back. Started this time with anal itching thought i had a rash and within a few days the pressure and pain was back. first few weeks couldnt wear anything but lose clothing and no underwear at all. when i walk felt like my anus is hanging out. Sitting on a heating pad all day got me through the first awful month. I have 4 children and no insurance. I am on paxil and it helps some, but i cry everyday still and i still need to drive and clean and cook and OMG deal with pressure on my butt and pain. I need advice i just need to know what this is and how to keep it from coming and going like this and how to make it go away faster. HELP ME.

You may want to check in with one of the physical therapists to see if there are muscles or something tightening up. The list off the home page are those that are PN aware. Sorry I forgot to say welcome and also check the FAQs on the homepage for more guidance.
Janet

As you probably know, Dr. Weiss works closely with pelvic floor PT's and uses a lot of their techniques in his practice.
From your history of how the injury occurred and your story which has some paralells to my own, I would guess you have some joint issues in your pelvis: pelvic joint dysfunction often referred to as sacroiliac joint dysfunction or SIJD, which is only partially accurate because the sacroiliac is not the only joint in the pelvis (there is the pubic symphysis and the articulation of the pelvis in relation to the hips as well). A "stuck" or misplaced joint will cause a movement dysfunction, not generally visible on imaging studies, because they are still pictures and do not show how you move. The result is tension on other pelvic structures (muscles, ligaments, nerves, etc), and a case of pelvic floor dysfunction results.
On the home page of this site is a "find a PT" section; many people with scar tissue entrapment of the nerve don't really benefit from pelvic floor PT but you sound like an ideal candidate for PT. Many pelvic floor PT's just deal with the soft tissue aspects of pelvic dysfunction; if you are able to find one in your area who has experience in correcting SIJD that would be better, but based on your history I think there is a good chance any PT at all would give you some benefit. Ultimately, I think you need to be checked for SIJD. If there is no pelvic floor PT local to you who deals with the joints, the specialty involved in joint manipulation is PT Manual Therapy, and if you cannot locate a PT Manual Therapist in your area then try the sports PT's - don't ask them if they deal with pelvic floor because that will be a "no", ask them if they treat SIJD.
You can start getting symptom relief even from soft tissue work by a pelvic floor PT, but meanwhile shop to get that pelvic bone structure checked as an underlying cause. This is not Doctor stuff, it is hands-on, PT stuff.
All the best to you. You have been in remission before; you can get there again!

Thank you so much for answering my post, i will do my research on this. Like i said i just have no clue what is going on. I feel like I am the only one, with this specific issue since mine tends to go away for so long. I sit here and read all these post and think my god these poor people have to deal with this pain everyday for years and years. I should be thankful that mine goes away, but then it makes it that much harder to deal with when it comes back, cause it starts all over again. Thanks for the advise i will check this out.

I forgot to mention that when i was 19 i had surg. for a cyst on my tailbone. Not sure if this has anything to do with the problem. I dont seem to have problem walking or moving its basically around my sphincter. Do you think i need to see a PN Dr? or should start with PT? I just want to stop thinking about it for 5 min.

Certainly up to you but it seems we are leaning towards PT to see what they say since you may not need the doc. In the meantime you could research a doc and may want to consider making an appointment as sometimes it takes a bit to get in. I had to fill out and send in the multii page questionnaire before getting an appt.
Janet

Pretty much anything a PN doc can do is either invasive or a medication, whereas PT is a very conservative treatment so I think it is worth trying 1st.

I did some research i did see a pt once down in the city the last time this happend and i left there in more pain. Scared me so i didnt go back. I just want to know for sure what i am dealing with it is so hard for me to see any relation with pn because mine goes away. Tried to go for a walk today with my daughter and my anal sphincter would act up. I sit on a hard chair and i feel fine, until i get up and start walking around then the pressure in my sphincter is back. I have been feeling little electrical shock pain there also, that was a lot today. Sorry i just have no one who understands what i am going through and i have so many things going on in my mind rt now.

sorry i am not sure how the si joint can be my problem, im not finding anything that is saying that i would have anal sphincter pain and pressure.

The little electric shocks you describe will be nerve pain, I'm sure sunshine. Neuropathic pain is so different to other 'normal' pain. The electric shock being one of it's guises.
Would you say that the pressure you feel could be described as a 'foreign object' when you notice this particular symptom? Some people with neuro pain do report this 'foreign object' FO feeling. I have it from time to time in my rectum (and labia) although for me there is no pressure feeling when this occurs as the FO is knife like and follows the path of the nerve. Others have reported golf balls, grapefruit sized FO's

I do have a much more apparent FO in the back of my thigh. This one is from the post femoral cutaneous nerve, but that fact is immaterial.
This one feels like a stone in my thigh at the back, and is always there. It does get a pressure feeling,a vice like grip feeling around it with 'activity' and becomes bigger with greater pressure, as the day goes on, depending on what I am doing. Obviously there is nothing to feel, nothing is actually there, just the feeling of it and a feeling of pressure around it.
Sorry if yours is nothing like this, I'm just trying to explain some of the 'weirdness of nerves'.

As for which avenue to go down. . . .PT may create more pain initially (many do report that) but it is a good way to start things, although you need to choose a PN aware one of course. It is almost a requirement of any pelvic pain sufferer once any more usual causes have been ruled out.
Any initial pain will subside to base level. You would need to evaluate the pain to any gain equation after a few sessions and make a decision then to continue with any particular treatment (or not).
Along side this I would also look at medication, there is advice about what can work on the home pages. It can be a trial and error thing and a often needs experimentation to get a good working formula.

As mentioned a PN Dr. will be using a more invasive treatment than any PT, like an injection for treatment. Although if a balance of medication prescribed is effective, many people stay with that.
A Dr. will also do a good clinical examination and give you an all important diagnosis too. Some times they will recommend PT if they think that tight muscles are responsible. Of course you can find out if tight muscles are involved before this with a few PT sessions yourself.
Now that you have mentioned the op you had all of that time ago I would tend to go for a PN consultants opinion. You may find that you are referred for PT but at lest then you should have a diagnosis.
Confirmation of that diagnosis may require a nerve block injection but a good clinical examination by a PN aware consultant should give you the initial diagnosis opinion.
The other thing to do is find out as much about the problem as you can.
I would say that your former operation could be the reason why you now do have pain, it seems too much of a coincidence that the pain is in the same place. Now you need to try and find out what causes the pain, and hopefully you will be able to discover what makes the pain subside too.
Sorry if I haven't given you any actual concrete step by step advice but you will need to weigh up the financial/insurance implications etc of how to proceed. No answer here is wrong, all good advice. If your own particular problem is tight muscles, PT will be a good place to start.
If the problem stems from the op you may need a little more medical help.
If the problem stems from the op and only flares from time to time because of tight muscles in that area, PT will still be a good place to start.
I think tho' that the good news is that you do have what seems to be a very definite branch of the nerve that may be being affected. Did the blocks you had target this branch of the nerve or just the pundendal nerve in general and were they guided?
Take care,
Helen