Health Organization for Pudendal Education

Hello all-

Wondering if there is anyone out there who has had a hysterectomy after/with their pn diagnosis. If so I would love to talk with you about your experience.

Thanks!
Merrie

Merrie, I have had PN(E) since '05, had bilat TG surgery in July of this year. I am scheduled for a robotic hysterectomy taking everything but the cervix on Jan 10th so I will let you know. Katherine

Merrie,

I had a laparoscopically assisted vaginal hysterectomy in November, 2010, two weeks after my PN diagnosis. I have a long history of endometriosis. I underwent the hysterectomy hoping to get rid of the "endometriosis" pain. It didn't work because the pain was from PN. The PN pain persists. It's pretty bad, but I don't think it was made worse by the surgery.

KMC, how is your recovery going?

Lernica

Hi Merrie,

I do not have PN from a Post hysterectomy, but post hysterectomies seem to be high on the list of what causes PN issues. There have been different thoughts on how PN is developed from the hysterectomy, everything from scar tissue, to having your legs being bent in a certain way, for a long period of time.

Take care,
Wendy

Hey My hysterectomy went well. It took about 4 hours, robotic assisted lap ie da Vinci technique. Went home the next morning. I initially had increased PN pain but it was probably from positioning and being cathed for the surgery. The spike only lasted about a week. I have found that the hyst has helped my urinary frequency quite a bit, seems my bladder can hold more with the extra room lol. I have also had a noticeable improvement in lower back pain. Probably my biggest complaint is the clavicle/chest pain the first day post-op but Thankfully it only lasted a few hours..evidently due to the gas used to distend the abdomen for surgery irritating the phrenic nerve or something...and then what I refer to as "broken glass bowel" which lasted a couple of weeks. Basically anytime gas or stool was moving through my bowels it felt like broken glass and was quite painful, enough to have to lamaze breathe through it. I joined a site called HysterSisters which has been very helpful and following their advice I made a tummy binder (allergic to latex) and once I started using that it did help quite a bit. Basically had to just wait it out though. That site is good, they have pre-op, post-op, landmarks, suggestions, lots of articles on everything and I have been in touch with several ladies who had surgery the same week and even day I did so we can support one another. Nice! Would highly recommend it So...so far I wouldnt say it has "helped" my PN pain but it didnt make it worse, except initially, and as I am still healing from PN surgery as well I think with time everything will be excellent! Just think of all the money I will save on sanitary products!! LOL Katherine

Glad to hear the hysterectomy went well, Katherine. Thanks for the update, and carry on with the healing!

Lernica

Hi Merrie, I had a diagnosis of PN in 2007 (although I still am doubting that diagnosis). About a year later I had a laparoscopic supracervical hysterectomy (LSH). That was about 2.5 years ago, and I count it as one of the best things I've done for myself.

Thanks Lernica, if you dont mind me asking...why in the H*$%* did they do yours vaginally if you have PN? My PN doc insisted that I NOT have it any other way but the da Vinci to prevent further PN damage. My PN PT does not allow me to have any penetration at all, I cant even imagine them doing a vaginal (even lap assisted) hyst on someone with PN. Did you have increased PN pain afterwards? Katherine

Katherine,

I stand to be corrected. I think I consented to a laparoscopic supracervical hysterectomy, but then when I read the post-op report it seems like they ended up taking the uterus (etc.) out of the vagina. But I could be wrong about that. Here's the post-op report:

Pre-operative diagnosis: severe abdominal and pelvic pain, known deeply infiltrating endometriosis, multiple prior surgeries, probable left pudendal neuralgia and back pain.

Post-operative diagnosis: [blank]

Operation: Laser laparoscopy, lysis of omental adhesions, left upper quadrant entry, ilioinguinal block and incisional block with . 25% marcaine with epinephrine, lysis of extensive pelvic adhesions, salpingolysis, bilateral uterolysis, ovariolysis, resection of endometriosis from the rectovaginal septum and posterior vagina and repair of the rectum and the pararectal and vagina, intraoperative sigmoidoscopy, resection of anterior abdominal wall endometriosis.

Operative note: With the patient in dorsolithotomy following general anathesia she was a noted diffcult intubation, and this was confirmed on this occasion, requiring a glide scope as well as the bronchoscope, and we utilized a left upper quadrant Palmer's point entry, after placement of an orogastric tube, and this delineated some periumbilical adhesions which were taken down. We then completed a total of five punctures, with a 12 mm Versaport in the umbilicus, and two on the right, and a total of two on the left side, 5 mm ports. The appendix had been previously removed. There were extensive adhesions between the rectum and the posterior aspect of the cervix.

We began to carry out the subtotal hysterectomy employing a completely retroperitoneal approach, dissecting out the ureters on the right side, close to the uterosacral ligament and the right ureter at the ureteric tunnel, there was considerable, deeply infiltrating endometriosis.

Exploration of the entire left pelvic sidewall and the region here only indicated endometriosis along the pelvic sidewall and dissecting deeply into the region of the Alcox canal, we could not find any deeply infiltrating disease or adhesions in this area. We divided the round ligaments, created a bladder flap and then isolated the infundibulopelvic ligaments, after dissecting down the ureters, and dividing the IP ligaments. We then ligated these. We then developed the pararectal spaces and both uterosacral ligaments were divided and brought up and transacted.

We then were able to completely free up the uterus and divide the uterus from the cervix at the internal cervical os successfully. We then completed the resection and development of the rectovaginal septum and resected the deeply infiltrating disease, down through the vagina, mainly on the right side. We then placed this lesion plus the uterus and ovaries were removed through the vagina and the procedure was then completed by closure of the vaginal and rectovaginal incision.

We then reinsufflated and inspected for hemostasis. This being secured, we then released the pneumoperitoneum and closed all of the incisions in the usual fashion. Blood loss was minimal. The patient tolerated the entire procedure well. Upon completion and reversal of the anesthesia, was then taken to the recovery room in stable and satisfactory condition.

So Katherine, what do you think? It's all Greek to me.

BTW, this was my fifth (and final) surgery for endometriosis.

Thank you for your concern and assistance.

Lernica

Oh my goodness!! Well, it sounds like it was a mess in there and they did what they could, where they could. I'm so glad they took care of all that! and yes, I surely hope you would not require any further surgery. I'm sure you are so happy all that is out though, WOW!! I imagine it has made an incredible difference in your life just from the "no more menses" standpoint (and all that goes with it). I put a coat on yesterday that I hadnt worn in awhile and reached in the pocket to find a tampon (unused of course lol). I was so thrilled to be able to head to the trashcan with it!!! WOOOOOT! So did that surgery help your back and PN pain as well? Katherine