Health Organization for Pudendal Education

Just the basics on my problems, and thank you for allowing me to join. Hope what I write is not too much information!

I have had constant and increasing pain since June 2010, in the anorectal and genital areas, with great difficulty having a BM - always. Have done a considerable amount of research, looking for an answer, but nothing concrete established.

Pain just inside my anus/rectum, on the right side, and with this there is pain directly under my right buttock which extends into my right leg. All the pain that relates to my rectum/anus is centered on the right side.

Always very difficult to have a BM without straining; always pain afterwards. Usually blood on the toilet paper. Use a sitz bath to relieve things in the morning. Spend a lot of time lying on my side on my chaise longue because of the pain. Not an anal fissure I have been told by a colon and rectal surgeon.

I have more moderate pain in my bladder/urethra, which involves intermittent difficulty in urinating. I also have near constant pain/throbbing to my vulva and clitoral region, and a sensation of heaviness and discomfort. Often have pain above my coccyx, and the flesh there swells. The pain can feel like burning when I sit. I do not wake at night from the pain - take 0.75mg Lorazapam to sleep and 0.12mg in the day if I have spasms.

I have scoliosis, quite bad, from childhood. And problems with my neck being ‘off kilter’, my head leaning to the right slightly (as if I don’t have enough going on!).

Had both an MRI and a CT scan of my pelvic region in 2010. Diverticulosis was all they found. And a recent xray of my neck, where they commented as usual on my scoliosis.

Have no idea if any of this has anything to do with the Pudendal nerves – basically just clutching at straws in an effort to find out what is wrong and be rid of the pain.

Just a start on my present situation and what my life and its quality is now, which is not that wonderful. Not sure where to go from here, but am ready for any information that might help.

Thanks again.

StarGazer

Hello Stargazer,

Welcome to the forum. The symptoms you have described are similar to what many of us have experienced but the trick is to figure out whether it's the pudendal nerve that is the problem or whether it's coming from higher up in the spine. A good physical therapist familiar with pudendal neuralgia might be able to help you figure this out. If there is a PN specialist doc in your area that would be great too but if not, hopefully there is a PT from our list who is close to you and you can get an evaluation from them. http://www.pudendalhope.info/node/63 In the meantime, keep reading here and hopefully you will find some answers and our members will have more ideas on what you can do next. You may want to go ahead and make an appointment with one of the PNE docs in case there is a long waiting list.

Violet M

Stargazer,

yes, if you let us know where you are located, someone on here may have found a PN-aware doc close to you. We'd love to help you get some answers.

cm

Thank you very much for your replies.

I have been spending some time working my way through the old posts, reading what others have written to get more of an idea of what might be going on with my body! Found quite a few things with relevance, and now need to put together what happened to me in the past that I never really connected with the pains. Such as a motorbike accident when I was a teenager, falling on the ice twice in recent years, pulling snow of the roof of the house (and I am not a young lady...), and the fact that I have scoliosis.

I have had all the new problems for going on two years soon, and am so tired on being in constant pain and not being able to get an answer from doctors. I have gone through constipation, anal fissures, ‘women problems’ - that one from Mayo Clinic, when I said that I had pains in my vulva and clitoral area and throbbing there. Now maybe I have to consider that they were right and I was barking up the wrong tree with problems specific to the rectum and that area.

In mentioning doctors, I have also been checking out the doctors on here, and the time that it can take to make an appointment. I am in the Eastern USA, and am most happy to travel to see the right doctor, with the hope that he/she can sort it all out.

This is just a quick note, in thanks for taking the time to reply.

StarGazer

I am not sure what the protocol is, whether it will be okay to start a new post, or whether to continue on this one with descriptions of various symptoms that I am looking to compare with others. Not that used to boards and am finding it all a little confusing.

Thanks.

Hi stargazer, welcome
If there are any specific questions or points you want to raise or ask just put it under the most appropriate topic, easy If you find that you do have some PN issues it won't be the first time that a sufferer has had to 'go round the houses' before they get a correct diagnosis. I'm almost dumbstruck when someone actually gets a PN diagnosis quickly but thankfully that is happening.
Glad you have found us here,
Take care,
Helen