Hysterectomy Survey - Archive

[Amanda]

Hysterectomy and Pudendal Nerve Problems – Possible link.

Author: Amanda Foran Date: July 2005.

Sections:
Objective:
Study Design:
Results:
Conclusion:

Objective: To gather as much information from female Members of TIPNA and Pudendal.info Forums who have had a Hysterectomy and also have Pudendal Nerve Problems.

Factors considered:
To take into account any previous Gynaecological history, including Pelvic surgeries, Deliveries and the methods used to facilitate same.
To describe and quantify therapies utilized thus far.

Study Design:
An International (spanning three Continents), descriptive study of 37 Members, whose ages range from 33 – 70+, average age = 50.
Two people declined to take part in the survey and three others had significant PNE symptoms prior to having a Hysterectomy.
Therefore N = 32.

Results:

1. Clinical Indications:
Pelvic Pain (63.3%, 19), Fibroids (33.3%, 10), Endometriosis (30%, 9), Heavy Bleeding (30%, 9), Ovarian Cysts (23.3%, 7), Prolapsed Uterus (13.3%, 4), Prolapsed Bladder (13.3%, 4), Adhesions (10%, 3),.

2. Type of Hysterectomy:
Abdominal (60%, 18 ) , Vaginal (33.3%, 10), LAVH (8.3%, 2).

3. Other Procedures carried out at same time as Hysterectomy:
Bilateral Oophorectomy (43.3%, 13), Unilateral Oophorectomy (23.3%, 7), Bladder Repair (20%, 6), Pelvic Floor Repair (6.7%, 2), Appendix Removal (3.3%,1).

4. Gynae History:
a) Deliveries
Vaginal (84%, 21), C-Section (12%, 3), Episiotomy (56%, 14), Tearing (52%, 13), Forceps (28%, 7).

b) Surgeries:
Laparoscopy (28%, 7), D & C (20%, 5), Cystoscopy (16%, 4), Appendectomy (12%, 3), Urethral Dilation (12%, 3), Cervical Laser Treatment (9.5%, 2). Haemorrhoidectomy (4%, 1).

5. Timespan of PN Symptoms:
IMMEDIATE ( 66.7%, 20), 2 years + (23.3%, 7), Pre-Hyster (10%, 3).

6. Pudendal Symptoms – Areas affected:
Vaginal (86.7%, 26), Urethral (66.7%, 20), Pelvic Pain (66.7%, 16), Anal (40%, 12), Hip Pain (23.3%, 7), Perineal Pain (20%, 6), Back Pain (10%, 3),.

7. Treatments and therapies utilized by Members – to date.
Nerve Blocks (96.7%, 29), Physical Therapy (73.3%, 22), TENS (33.3%, 10), Biofeedback (26.7%, 8 ), Prolotherapy ( 23.3%, 7), US Therapy (10%, 3), Botox (6.7%, 2).

8. Surgery:
Trans Gluteal Decompression Surgery – 9 members.
Trans Ischial Rectal – 2 members.
5 respondents were deemed unsuitable for surgery.
27 respondents are considering surgery currently.

Conclusion:
There are many possible links between Pudendal Nerve Symptoms and having an abdominal or vaginal hysterectomy, which by nature, is a very invasive type of surgery. The incidence of Immediate pain post hysterectomy in 20 responses indicates that there appears to be a strong link.

A high number of participants had a combined surgery which included a Bilateral Oophorectomy and this increased the risk of damage to any tissues in the pelvic region including nerves.

As childbirth can produce a traumatic effect on the PN, possibly leading to a weakened and de-compensation of a pre-existing nerve problem – congenital canal syndrome.(2) Careful consideration must therefore, be factored and noted as most participants have had vaginal deliveries and episiotomies, which are all possible causes of damage or irritation to the Pudendal Nerve pathways. (1)

Pudendal Neuralgia can be the consequence of a pelvic or perineal surgery – Hysterectomy, Prolapse of Uterus or Bladder, and Episiotomy ; and also investigative procedures such as Cystoscopy, D & C, Laparoscopy and Urethroscopy.(3)
Many of the participants in this survey have undergone lots of gynaecological, urological, radiological and digestive investigations, including the above named surgical procedures during the course of seeking a diagnosis of their problems.

Pelvic pain is classified, within this small group, as a major factor and clinical indicator for a Hysterectomy. This indication leads to a case for women, when faced with the choice of this operation to request or question, if there are other suitable methods of investigation and/or treatment, before resorting to major surgery.(4)

Pudendal Neuralgia is debilitating for some people and the reasons for developing same are complex and varied. A consultation with a Multi-Disciplinary Team, is required in order to assist and treat sufferers throughout the world.

Discussion:
I hope that I have been able to portray the information from this survey clearly, and legibly. I have no formal medical training, and hope that this information will be a source of reference for member’s personal use, in their endeavour to understand this chronic and difficult condition.

Authors Contribution and Acknowledgement:
I am responsible for the survey concept and design, collection of data, input and statistical analysis.
This information was provided to me by members from Pudendal.Info Forum and TIPNA.org Forum.
I have treated all information in a confidential manner.

Sincere thanks to:
Members of Pudendal.Info and TIPNA.Org Forums for sharing their personal information.
Cactus and Kathi for their editing skills in compiling the Questionnaire and Report.
Tony Kay for his IT Assistance and Presentation skills.
Thanks to everyone who has given me support.


References:
(1)Robert, Labat, Shaffik; Pudendal Nerve Entrapment; Early Symptoms, Operative Treatment and Results.

(2)Bautrant, Bisschop, Vani-Elies, Massonnat, Aleman, Buntinx, Vlieger, Constanzo, Habib, Patrioni, Siboni, Ceas, Schiby, Uglione-Ceas; New method of treatment of Pudendal Neuralgia.

(3) Perry C. Paul; Peripheral neuropathies presenting as chronic pelvic pain

(4) Chung MK, Chung RR, Gordon D, Jennings C.; The evil twins of chronic pelvic pain syndrome: Endometriosis and Interstitial Cystitis.

[Quilter 2]

Hi Amanda;
My last gyn surgery was 2001 and that was Endrometrial Cancer. I was cut from public bone up past the belly button. My first one was when I was 17 and that was a Oophorectomy with a cyst the size of a grapefruit, so I was told. In between I've had numerous surgeries. Ovarys and Pholopean tubes, (sorry for the spelling) removed 1 at a time due to our great insurance system. When I had the cancer the surgery was suppose to be about 2 hours. After 4 1/2 the Dr. was finally done. He told my husband that I had so much scar tissue from all the other surgeries that it took forever to take care of me.
I don't know if this will help with your gathering of info, but maybe it will.
Warm regards,
Doreen

[Amanda]

Hi Quilter 2

With your permission I would like to reinvent this survey here on our new forum.
if you are willing i will email you the questions so that we can gather up to date members and add them to the survey.

[Quilter 2]

Amanda;
You have my permision. You may e me anything but I have dial-up and I may not be able to get any big mail. I also don't remember when I had what because there were so many. I will do whatever I can to help you.
Doreen

[Amanda]

Thanks Quilter

Can you send me a pm with your email address and I will gladly send you the survey?
The document is in word and is not a big file so your internet connection should be able to open it.

Thank you for your support.

Amanda

[scpain15]

I'm not sure where to post, so I trust ya'll will put me in the right spot.
I am pretty sure I have had PNE since my 1st child was born in 1987. I lifted weights and over exercised for years, especially when i was overweight. I am 49 and have had +15 pelvic procedures, not including colonoscopies.
They include D&Cs for incomplete miscarriages, (none of these are in chronological order), ectopic pregnancy, a cholesystectomy, after which i gained 80 lbs which i carried aound for 10 years, removal of ruptured ovarian cysts, uterine ablation for excessive bleeding, urethral dilitation, 2 tubal ligations, 1 tubal reanastomosis, 2 /3 preterm pregnancies with babies' heads at +2 for 3+ weeks, 1 awful episiotomy, only necessary bcs of an unnecessary epidural at 10 cm - then ineffective pushing, another delivery with a baby that almost didn't fit at 7' 5" (who knew), he also required that I have an epidural at 9.5 cm bcs he was sort of sunny side up and needed turning, my darling dr only had me try and push twice, and then just let my body get him low enough, Dr managed to use his fingers as forceps, thank the Lord. I was diagnosed w IC, and had several bladder installations in spite of no signs of IC in bladder wall - I actually had some relief - maybe pushed the nerve aside a little. Then in 2007, I realised I had a rectocele, terrible vaginal prolapse, bladder incontinence, so i had major prolapse surgery, with rectocele, enterocele, cystocele, bladder repair, no hysterectomy, I had already lost one tube to an ectopic pregnancy so I asked my surgeon to remove the other tube thinking that would relieve this constant pain I kept having on my left side. They did not do a hysterectomy, just reattached the sacrouteral ligaments, and left my ovaries. my drs did comment on how few adhesions I had in spite of my numerous surgeries. No one thought to check and see if I had a rectal prolapse, and I didn't realise that i did. After surgery, the pain was unbearable. Due to previous pain issues, I did have my 'regular' anesthesiologist managing my pain: 1mg of IV Dilaudid/hr. - scared the nurses to death - she had me on a pain pump, but had to just put me on a drip as I was in so much pain I could not remember to push the button.
I then took Oral Dilaudid for 3 mo. and really didn't walk, or get out of the bed. The strange sexual side effects, and this awful stitchlike pain in my left side+ pain in the left side of my vagina really did me in. I had always, as long as i could remember, had the awful stabbing rectal pain. Maybe since childhood. I know I fell on a balance beam when i was about 12-13. I wasn't supposed to lift anything>10lbs for a year, and take Miralax every day. Due to life circumstances, i had to lift things before the year was up, and the prolapse surgery failed, but most of my symptoms went away except the left side pain - right at the edge of the Laparotomy scar from the tubal renastomisis, the stabbing rectal pain, and occasional pain inside the left side of my vagina after intercourse.
THEN, my bowels problems got worse, oh did I mention having been diagnosed with IBS, too.
So, i had another colonoscopy/EDG. Now, I have moved to the town where i grew up. My Dad, an Anesthesiologist, drove me when I had this done, afterwards, I needed 4mg of Fentanyl which they never would have given me had he not been there to tell them about my pain issues.
I also had chosen my Internist very carfully as I had been diagnosed with so many wierd things, and wanted to get to the bottom - pun intended - of it all - he has a reputation of figuring out things NO ONE else can. Perhaps because he is very persistant, and VERY smart.
After the colonoscopy, I was in excrutiating pain ALL on my left side, and the strange sexual side effects came back.
Now the irony of the situation is that I discovered Pudendal Neuropathy, not him, BUT I went to him with all the information I could find, plus the information that I knew I had a rectal prolapse+my other prolapse had failed.
He immediately got on the phone, the internet, etc and started to learn as much as he could about this. He consulted with my Dad, and they found a local Anesthesiologist who had treated some women with blocks - marcaine and steriods - to diagnose PN, to figure out which branch, to find out if other nerves were involved:illioinguenal, subcutaneous branch of femoral...He sent me to a fantastic colorectal surgeon, and gyn surgeon who can take care of the prolapse/hysterectomy - he is gathering the information so that the radiologists can do the proper MRIs, and I have a radiologist friend in another state who regularly reads PN MRIs - so now the issue is - the neurosurgeon to do the surgery because clearly that is where I m headed.
My question to all of you is this, has anyone had a hysterectomy, and other surgeries at the same time, and if the surgeon(s) are coming down through the abdomen, and up through the perineum, and vagina, because they are going to have to open up my vagina to repair the rectocele, and they are going to be working on my rectum and perhaps my sigmoid colon, and my bladder, and they are going to clean up all the adhesions they can manage, wouldn't they have a large enough surgical field to see wht they are doing?
My father, the anesthesiologist, my uncle, an ob-gyn, my gyn surgeon, who also does great deal of gyn-oncology surgeries, my colorectal surgeon, my anesthesiologist, who is ultraconservative, all say that there will be plenty of room for the right neurologist to do this as it will not require the usual tight field if this were the only thing being done.
I must have the other surgery as the bathroom and sex issues are a problem in themselves, and I have some other medical issues that would be improved my taking straight estrogen - need to lose the uterus and ovaries for that.
So anyone done anything this radical before?
My anesthesiologist will continue with treatment after the surgery. Having to travel creates a burden that i'm not sure we can manage on many levels. I have so much support in my hometown...
Thank you so much for hearing my story. I have not written it down before. I have been flat on my back this time for going on 5 months. i thank you again. I no longer feel alone.

[Violet M]

Hi SC,

Thank you for posting your story here and for showing us your fighting spirit despite all you have been through. You are not alone here and even though we may not have all of the answers we understand what you are going through.

But I'm not sure I entirely understand your question. You are contemplating having a hysterectomy, right -- but what is the other surgery - removal of adhesions? And you would be having the rectocele repaired? Will they be doing anything in the area of the PN? I'm wondering --- if it is the PN that is causing your pain, all of these other things you are having done may not make a difference in your pain level.

[Judith]

hi SC pain, my gosh... just got dizzy from reading your history. Ouch Ouch Ouch. I'm an RN too but still get queazy when I read all that. YOu sound really strong and on the program here.. hope we can help. I'm confused a bit too. Who are you looking at for helping you with the PN part? That's the part that isn't clear to me. We share some thing in common regarding the fact that we have lots of medical ppl in the family, but if they truly are not talking to people who treat PN almost exclusively, I hope I can convince you to start talking to those people. With all the surgeries you''ve had, adhesions etc, it's likely you can have the PN irritated, inflamed, entrapped... something, and personally for that part of the eval I'd see one of the PT's at pelvic pain rehab center in San Francisco. They can do a great eval, they are well versed in all surgeries, and can help you sort out your decisions, and if need be.. guide to the proper surgical expertise. They also have a highly respected pain specialist that they work with. This disease can humble doctors very quickly who do not work with it regularly, and my humble warning is to be careful in regards to suggestions they make in terms of blocks etc. You'll find that nerve blocks are mostly diagnostic, and not for treatment. Anyway, just thought I'd throw that in. What part of the country do you live in so we might lead you to some good consultants. It's great that you have so many wonderful advocates, just want to make sure that they are talking to the people who can best help you figure if this is ultimately PN.

Judith