Health Organization for Pudendal Education

Hi,

I saw a proper (recommended and respected) pelvic floor specialist doctor two days ago.

I am still recovering from the near-death experience of the exam. Wooooo. It needed to be done, but he touched on muscles in the rectum that sent horrible pains to the vagina.

Since the exam I am having cramping and sharp pains in the pelvis area (lowest stomach area before vagina). I never had this before. Any idea why?

The doctor wrote the following summary:

"The abdominal examination was normal. The pelvic examination shows a severe levator syndrome with a severe bilateral perineal obturator pain and anismus and ileorectal pain. Severe coccyx pain related to the anterior tension of the PR (puborectalis) muscle. Vulvar pain and vestibular hypersensitivity.

The patient shall have sedation (marcaine lidocaine steroid) injection followed by botox injections to try to stop progressively...."

He also writes: "Patient with pelvic pain at micturition problems in 1997 and 2007, considered to be IC at time." (Note, had two horrible episodes, both lasting 6 months, suddenly coming and suddenly going. Doctor thinks my problems started them.)

The doctor said the very tight muscles can easily be compressing/entrapping the pudendal nerve (or problems with pudendal nerve can cause tight muscles), but that doesn't matter right now (which came first, the chicken or the egg?).

First thing is to try to help with pain and get out of acute condition. He also talked about 'pelvic myofascial pain' & in a state of 'chronic pelvic pain syndrome'. What does all this mean?

I do not understand much of what he wrote. It seems the terms refer to constipation issues (from googling a bit), but that is one thing I have never suffered from. Maybe someone can help?

The doctor said my condition is too acute/severe for any sort of PT or anything right now. Only thing is to start with injections (as mentioned above) and take it from there....he did say injections would realistically reduce pain by 10% - 30%, but that is a lot in my situation.

Any thoughts?

Thanks.


PS. The doctor ended with "You also need to think about how much you need this pain too. I am not saying anything, but think about it."

Can someone PLEASE explain this to me? It seems many people all over the world has been told his. The doctor wrote of medical problems found. Said situation is too acute to attempt PT. My pain is more than real. (I can't believe I even have to defend this.) I am missing out on life...... My son waiting from November for his birthday party (I am famous for great parties . I am very social person, my husband & I had a babysitter at least once a week, missing coffee with friends, dinner parties missing, life. Prisoner to pain stuck in my house.
Now feeling so sick inside as kids spring break is starting this week and they have off almost 3 weeks of school. Sooooo many fun activities and shows going on. (First time they made an "Ice City" in Jerusalem - kids so want to go so bad. Me too!) I always plan so much fun during this time, going to on picnics and hikes, meeting up with friends who we don't see often... my husband takes time off work. What kind of person would want to miss out on all of this? What kind of 'sick person' would need pain?? I do not understand this. I want is my life back. Why this 'needing pain' connection I keep hearing/reading about? And his medical findings are real.... or what?
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April 2011 - Woke up one morning with sudden low coccyx pain and horrible rectum pressure with feeling of foreign object inside. Horrific pain for one week. Pain (was more of a dull ache) then came every ten days or so, lasting approx. 3 days. Annoying, but did not stop life. November 2011, BOOM. Pain was so bad ran to E/R. Months of seeing about 100 doctors, in hospital 7 times. Never any mention of the pelvic area. Never once. Had numerous gyne/urogyne exams. Only focus was on coccyx pain, despite me saying pain was in rectum, radiating to coccyx. Pain level 10 most of time. Completely incapacitated. February 2012 vaginal pain joined in. Extreme discomfort. Sharp random pains all over. Deep inside vagina very sensitive. Entire area feels like it's being beaten with hammer. Vulva area just in pain. Hurting so much. Was recently told PNE by 3 doctors. Meet 100% of Nantes Criteria.

*** Was taking up to 150mg morphine day + Oxycontin. Not helping. Now on liquid oxycodone, up to 100cc/50mg a day taking edge off, Lyrica up to 350 currently, starting methadone this week.

Len, I am so sorry. This doctor had no right to suggest that you "need this pain". That is absolutely ridiculous and I don't for one minute believe it. I've had docs say some amazing things too and have heard similar horror stories from other patients.

Regarding the report, basically he is listing many of your pelvic floor muscles as being very tender -- many of the same ones I had problems with.( Levator muscles to the back of the vagina, obturator internus to the sides). Once I had the nerve released surgically, the muscles slowly calmed down and I got my life back. I was not able to tolerate internal myofascial release before surgery. I also had problems with urination (medical term - mictruition) problems -- all related to PNE and gone since my PNE surgery. I'm not seeing where he mentions constipation in the report or anything related to constipation but maybe I'm missing something.

Chronic pelvic pain syndrome and myofascial pain typically refer to pelvic floor muscles being in spasm. Occasionally we hear of physical therapy (myofascial release) and botox helping the muscles calm down but some people do not have success with these therapies and go on to have nerve release surgery.

If you feel this doc knows what he's doing, you may want to go ahead and try the injections to see if they help since they are less invasive than surgery. If you try Botox, ideally you want a trial of just lidocaine into the muscles and that could be an indication that Botox might help. But keep in mind, Botox is considered temporary pain relief since it wears off in several months and will not fix a nerve entrapment.

The marcaine/steroid injections he is referring to may be pudendal nerve blocks. Did he mention nerve blocks? These are given to try to relieve the inflammation in the nerve in hopes that if it is swollen due to inflammation and not gliding properly between the ligaments or other tissues that the steroid will calm down the inflammation to allow the nerve to start gliding properly again.

I hope this info helps. Don't for one minute think you are a "head case". You have a medical condition and you have nothing to be ashamed of. Don't let anyone take away your dignity.

Hugs,

Violet

Hi Len,
No, it's never any fun to have someone pressing and poking on your painful areas.

Len wrote:Since the exam I am having cramping and sharp pains in the pelvis area (lowest stomach area before vagina). I never had this before. Any idea why?

I don't know for sure, but he probably irritated your nerves by adding extra pressure to an existing compression.

Len wrote:First thing is to try to help with pain and get out of acute condition.

Acute? How long have you had this condition, hon? Please correct me if I'm wrong, but I thought your symptoms started about a year ago and became much worse this past Nov?

Len wrote:The doctor said my condition is too acute/severe for any sort of PT or anything right now. Only thing is to start with injections (as mentioned above) and take it from there....he did say injections would realistically reduce pain by 10% - 30%, but that is a lot in my situation.

I guess I'm a bit confused - in acute situations, usually the first line of defense is PT. Especially if he thinks part of your problem is pelvic myofascial pain. If that fails, botox is usually suggested to help aid in loosening up the muscles so the PT can manipulate them better.

Len wrote:PS. The doctor ended with "You also need to think about how much you need this pain too. I am not saying anything, but think about it."

What the hell kind of statement is THAT??!?!?!?
Violet did a fantastic job of explaining the other aspects of your report.
How are you feeling about the injections? Have you scheduled any appointments yet?
Warm regards,
Karyn

i dont think u should see this doctor again thats insane that he would say that sounds like a quak . im sorry he is an asshole . i can understand how u feel about not being able to do all the social stuff u normally do . I often dont want to go out much anymore or have friends over try not to let it get u down and look for other ways to have fun inside ur home . i had a few friends over for movies and ended up in the bath room with ice on my vulva such a bummer i know . the injections may help u but if possible try to find a doctor that isnt such a jerk he should b trying to calm u not piss u off ! if u cant find another doc than may b just doing the injections with him may help but let him know he mad u upset and that was out of line so hopefully he dosent say anything else inappropriate . also im not sure if ur religious but try a meditation with or without prayer on preference with deep breathing and ice . ok girl hope i helpd sum ttyl

Hi -

Quickly....Really big thanks for your replies. Will reply tomorrow - this site isn't the best for writing via Android.

Just one thing....not only was doctor an asshole, but get this shocking part: I called the hospital today to make appt. w/ him for injections & was told next appts. are end July/beginning of August!

I called dr's office & asked his secretary if I could leave a message or send a fax for him regarding this. She said (shockingly) "the dr's really too busy for messages, but I've been working with him for many years and I promise you he is one of the best doctors in the world. If he told you to make an appointment via the hospital, he knows the wait and what he's talking about."

-I must add here that we have socialized medicine in my country, meaning medical care is basically free. However many doctors also see patients privately, for example if you want to see somebody immediately & there is a long wait. The wait to see this doctor was about four months, so I saw him privately. Approximately $400.00 (cash or check, no credit cards accepted). You would think as a private patient I get a bit more courtesy? -

I asked the secretary to leave him a message in any case, making sure he understands I have been in constant pain since November, and most certain my body won't hold out until the end of July.

(I assumed there was a misunderstanding anyway, because he told me I needed the injections asap, that there is absolutely nothing else I can do until then, that PT could never be done in the severe tight condition of my muscles. He also said to try to get off of the meds I'm taking as they cause so much constipation which is horrible for the muscles (duh).....he said hopefully the injections would lessen the pain a bit so I could 'greatly reduce' the opids/narcotics immediately. Lastly my husband asked him (on Thurs) if I'd be able to get the injections in the next week & he said to call after the weekend, he didn't know how booked he was.....)

But his charming secretary did call me back and said in her singing voice "I was right, he knows your situation so just to go ahead and make the appointment when there's one available."

I ask her what I'm supposed to do between now & the end of July. And and she started that he's the best doctor in the world la la la...I hung up the phone. (Btw, this dr did train under professor roberts for a bit....he is french.)

Don't even know if there are other doctors here doing such injections. Meanwhile the giant melon that I've been 'carrying around' in my rectum got a new friend today...a grapefruit in the vagina. OMG.

Did finally send off email to France, perhaps to go there for a few weeks of pain control. My body and soul need a desperate break. No body can survive at level ten pain for so long.

My daughter begged me to drive her to a friends today. I couldn't move & just having to sit, especially in the position required for driving, would have definitely ended up with me shaking in cold / hot sweats from pain. Plus I'm crazy drugged, not to mention the inability to move my feet and arms required to actually drive the car. My daughter did not want to go there in a taxi by herself...I felt so bad as this is a new friend....

So I was thinking I will have to somehow overcome all of the above to get her there, but then (being totally honest here), I did not trust myself that I wouldn't crash the car, and not talking by accident.

(Thus called my husband at work & asked him to take her (which so annoyed him, as everything does lately)....but thankfully she got to her friends and had a great time, and my car lives on to tell the tale
....)

OK, that was not so short but still want to reply to your amazing comments above. Will do so in the morning.

xoxo

Hey Len, just checking in on you. What's the latest on your saga with this doc?

The things he and the secretary are seeing to you are incredible.

I totally misinterpreted your Dr's meaning when I read through your first post Len. I thought he was being compassionate saying 'you don't really need this pain do you, so have a couple of injections and we will take it from there. But it was completely the opposite!! I couldn't believe it!!
I'm glad his secretary thinks so highly of him, doubt anyone here does, twit!
How are you doing now? like Violet would love to know how you are.
Take care
Helen

See a physical therapist about the levator-ani syndrome. Tight muscles can and will constrict blood flow as well as cause a constant state of irritation for nerves which leads to neuropathy. Over time the muscles can be re-trained and the nerves can heal. But like I said, over time. Good Luck. Try this for a little while before even considering surgery.

LEN, any updates for us ??