Health Organization for Pudendal Education

Hi,
About 5 years ago I started experiencing extreme pain lower left abdomen, I went from Dr. to Dr. to Dr. trying to figure out what was causing the pain. I finally found an OBGYN who wanted to perform a diagnostic Lap to see what was going on. After the lap I was diagnosed with endometrosis, stage 1, but I felt WORSE than before the lap. After 6 months of hot searing pain my Dr agreed to a partial hysterectomy, November 2012. Here I am today with an InterStim "trial" which is working because of nerve damage. I have urine retention and it backs up into my kidneys because there is no signal to empty my bladder completely. My new Dr. is not sure if there was some damage before the surgery and the surgery made it worse, or from the surgery itself. I believe it was damaged before the surgery due to the pain I was in after the diag lap (same pain before the lap but worse) I don't believe the little bit of endo she found was causing the searing pain. I have a desk job and always very active outside of work, skiing, white water kayaking, weight lifting, etc. I never thought this could have been nerve damage before the hyst. until I found this site and realized there are many things that can cause this nerve to be damaged.
Also another odd thing my brother and mother experience the SAME symptoms I experienced so I don't know if there is some genetic predisposition? I don't think OBGYN's would think of "nerve" damage. All I have to say to women out there do NOT get a hysterectomy unless you have cancer or a detrimental disease or issue. Thank you for listening to my story and I hope to gain some useful healing information from this website and share mine as well. I opted for now not to get the InterStim because I want to try to heal the nerve without jumping into surgery.

Hello,

I am sorry you are dealing with so much. It sounds like you had PN type pain prior to surgery and the surgery worsened the pain, is that correct? Where is your pain located? Is the trial helping with the pain? Have you been evaluated by any pelvic floor physical therapists?

Sincerely,
Stephanies

Hello Skier,

Welcome to the forum. I see that you are from one of my favorite states. Not sure where you are in Colorado but there are some good docs and PT's there. The only think is that lower abdominal pain may be a different nerve than the pudendal nerve causing your problems. Have you been diagnosed with pudendal neuralgia? There are nearby nerves including he genitofemoral and ilioinguinal. Also psoas muscle tension can cause pain in the lower abdominal area. Hopefully you can find some good providers who will be able to help you sort this out.

Take care,

Violet

Hi, thank you for the responses. I am in Denver, yes my uro/gyn said I have Pudendal nerve damage from the surgery, but he isn't sure if it was there before the surgery. I am trying the InterStim therapy trial and yes it is working! I just don't want another surgery, I am going to opt for all of the treatments I can first. I was in pelvic floor physical therapy, it did stop my spasms. I am going to a pain management doctor in 2 weeks, he might be able to determine if another nerve is involved. I don't think it is psoas muscle, I went to a medical massage therapist for that as well, she said it was "tight" but not too bad and released it, I saw her about 3 times and she adjusted my work station as well so I didn't get repetitive motion injury. It is hard when there are so many "what ifs" and to think I had organs removed that pathology showed were healthy! AH

Well, I don't blame you for not wanting another surgery and it's great that the interstim is working. I would be interested to hear what type of interstim placement you had and who the physician is who placed it. Had they done these for PN patients before?

Thanks,

Violet

It is the Medtronic InterStim: http://www.medtronic.com/patients/overa ... t-therapy/

The Dr is: Dr. Oscar Aguirre http://www.ascdenver.com/index.cfm/ID/2/

I just think for me I want to try other things first and exhaust all options, and if something works great if not then I know InterStim works and I can always go back to it.
I rushed into the hyst because I was in pain and it left me organ-less and still in pain with other issues from not having those organs. Anyhow I just found out about having
this nerve damage and haven't tried other things first. I think the Dr. thought it would be the best option for me since I was in Pelvic Floor Physical Therapy for months and it didn't seem to be working
very well. I love Dr. Aguirre, he is the FIRST Dr. who did NOT want to cut me open "to look" I saw 4 other Dr's before him; but after he removes the trial wires next week I will go to a neurologist who specializes in nerves.

Thanks, Skier. I hope the neurologist will be able to help you.

Violet

Thank you, I am so glad I found this site! By the way, my brother and mother have these same symptoms I sent them to this site. I think maybe we have some hereditary nerve dysfunction? It is very strange, all three of us with the same symptoms. My mother did not have a hysterectomy, but she has chronic pain in urethra bowel, lower back, pelvis for years she describes as burning pain and unable to walk some days. She saw several doctors and was put on anti-depressants, no one helped her. I am going to get her and my brother to a nerve doctor as well.

Hi,

I,m from the Uk and have also had an unnecessary laparoscopy and hysterectomy which sent the pain from manageable to dreadful, like you I trusted the doctor and rushed into it as I wanted to get on with my life, huge mistake.

I read somewhere a long time ago a paper written by Prof Robert who leads the team at Nantes, that pelvic surgery has been proven to exacerbate the irritated nerve. It's a travesty that more gynaecologists are unaware of the potential damage they can due when uncertain of the cause of pain.

I wish you well on your journey,

Regards Molly

Skier, Dr. Bautrant has seen pudendal neuralgia run in families. It runs in my family so I believe that there can be a genetic component but I don't remember seeing any literature or studies that would confirm this.

Violet