Nerve Damage on the Vaginal Cuff After Total Hysterectomy

 Here's the link to the actual article describing my experience:  https://medium.com/@SherrilLynn/nerve-damage-to-the-vaginal-cuff-after-total-hysterectomy-6d9a2e576f15.
 
 
This has happened to me and I can find virtually NOTHING written about it, except the pain filled pleas of other women it has happened to, looking for answers as to why this has happened to them and what they can do about it. 

I'm going to start a place for other women who have and are experiencing Nerve Damage to the Vaginal Cuff after a total hysterectomy (as far as I can tell there's no cure and nothing to do about it but pain management) to publish their stories here on the ICIE blog.  A collection of experiences of women who have Nerve Damage to the Vaginal Cuff (I'm going to shorten it to NDVC since no one in the medical field has deigned to give a name to this diagnosis), after a total hysterectomy.  I'm pretty sure there are quite a few of us out there but no one has counted so who knows?

If you want to be included in the collection, send your story to me at... ?  {I'm working on it.}

Leave it in the comments if you want, and I'll let y'all know when I figure out a better way.


Comments

  1. I can't locate the other woman's stories on medium.com.

    ReplyDelete
    Replies
    1. There aren't any yet. Some people are incredibly shy about airing their privates in public. Go figure.

      Delete
  2. I had a total hysterectomy 2 years ago and I have had constant vaginal pain since I went to my gynecologist he acted like he couldn't understand why I was hurting I also went to a urologist she suggested I had nerve damage it's a pain it's hard to explain it's like a shocking sensation it's like someone has clamped you with jumper cables and an electrocuting you in that area

    ReplyDelete
    Replies
    1. I'm very sorry to hear about your doctor's... lack of back bone. What else could it be? He won't diagnose the damage he's caused is what it sounds like to me. On the medium.com version of this article I went into exactly how my doc diagnosed me with nerve damage. He so didn't want to say the word, that he didn't. He said nerve... and he whispered the word "nerve." When I was checking out the lady asked me what he said and I replied "nerve damage" and she opened the whole file up to look, then said 'you're right; that's what he said.'

      Unfortunately, they make us sign away any rights we might think we have after the surgery, before the surgery. It's a dangerous business, surgery.

      Your pain sounds terrible. Mine is just regular old deep to the core of my very being pain. My allergic reaction of itching to my pain medicine got worse and worse until I finally had to stop taking it. Now I've got a script for naprosyn and I try my very best not to trigger the pain in the first place. That's where I'm at right now; I would appreciate hearing how you are doing, when and if you are able to respond.

      Thank you for writing.

      Delete
  3. I too went through a vaginal cuff tear nightmare! I am now searching for answers.

    ReplyDelete
    Replies
    1. Good luck to you. It's a big secret and as long as we keep up with the pretense, I don't think we will ever find real answers.

      Delete
    2. Hi Sherrill. I had a hysterectomy and then a very messy and nasty neuroma on my vaginal cuff. I have had a second surgery with a pelvic pain specialist to resect the cuff and remove the neuroma. I am definitely better than before but not 100% My amazing doc is always looking for new "solutions" and my next step is a nerve block the the area. Which isn't hopefully to give permanent relief but may help answer some questions as to what may have been damaged. Also, there may be a chance to use an alcohol injection into the remaining trigger points to desensitize the nerve and not kill the tissue. Good luck on your journey and don't give up looking for a doc that can actually help you.

      Delete
  4. I am 1 year out from a total hysterotomy and I still have pain at the top of my cuff. Any suggestions on help?

    ReplyDelete
    Replies
    1. I'm 5 years out, so no. No suggestions on help, except maybe think about coming out from the curtain of anonymity so we can band together and DEMAND answers.

      Delete
  5. I’m having the same problem. . Do you know if they can inyect the nerve?

    ReplyDelete
    Replies
    1. I assume you mean 'inject' the nerve. With what? Pain medicine, I assume. I don't know about you but my experiences with injected pain meds have not been good. There's no way I'm letting anybody with a foot long needle NEAR the very core of my being, where my pain in located. If that's what you want to do though, it shouldn't be hard to find someone who's will do it to you. Please be careful who you choose to give that honor to, though. There are many more who don't know how to do but do it anyway, than there are pain management professionals who do know how to administer pain medicine via a very long needle. In my experience: Look for someone with an Indian/Ayurvedic background. It's also really helpful if they seem to give a damn if they hurt you or not. I've experienced several that didn't fulfill either qualification, and one who filled the first but not the second. I didn't let him repeat the injection when the first one wore off. Three months down the road my memory of the soul stripping pain he caused when he stuck that wiry thing down, down, down into my shoulder were still extremely distinct.

      Good luck!

      Delete
  6. I had my hysterectomy almost 5 years ago and two vaginal year reapir surgies, the last one resulting in nearly claiming my life and leaving me in immense pain still to this day. Upon my 2nd repair the dr closed my right ureter up in my vaginal cuff causing a complete blockage and my right kidney to rupture. I underwent emergency surgery 24hours later after going into renal failure due to them waiting to do the necessary tests to reconize that the flank pain I complained of was indeed due to my ureter damage rupturing my right kidney. A long road of 4 stents being placed and removed, blood in my urine for months on end, going home on a cath bag and seeing many specialist... my pain continued. The vaginal pain is so intense, making sex with my husband near impossible, until finally pretty non-existent. I also have constant pain in the area between my hip and pelvic bone (diagonally) and flank pain on and off as well as some reaccurent UTI’s and random blood in my urine. I have seen a slew of specialist, tried many many pelvic specialist and therapists, underwent extremely painful vaginal cuff injections with giant needles that brought me to tears, more trigger point injections, and a couple more surgeries to see if the could figure out what’s wrong. Still nothing! I’m now 2.5 years out from that last surgery that almost took my life and have pretty much given in to living a life in chronic pain and a non exsistent sex life with my husband, who I adore! I see a chronic pain specialist and am on many medications daily, Just to get through my day so that I can function with my 4 kids and be as active as I can be. My activity level is greatly affected and I am completely defeated by all that has occurred from all this! I got the hysterectomy to “fix” my problems from years of painful endo, fibroids, polyps and overall pelvic pain and ended up being in a much worse position than when I had began! I wish I had never gotten a hysterectomy! I wish I could go back in time and chosen to live with the pain and bleeding issues I had since I was 16years old! This has caused such a strain on my family and marriage and my overall life and health. No one has answers and I’m tired of being everyone’s Guinea pig as they all “try to fix me!” All I hear is let’s TRY this or let’s TRY that but no answers! I’ve seen specialist get excited to be up for the challenge to “fix” me as they tell me “we are in unchartered waters” but I have no answers or even a glimpse of hope left in me. My only hope is that my experience can somehow help others and help my two daughters navigate through their journey’s if they ever face this type of decision.

    ReplyDelete
    Replies
    1. I am SO sorry to hear all of your issues resulting from surgery that was supposed to help with endo, fibroids, etc. I'm also sorry that it's taken me so long to publish your comment. I've been out of it for awhile, I'm sure you can understand. I hope to address many of your concerns soon, with new writings and possibly other resources. Keep in touch.

      Delete
  7. I had surgery a year ago and I have been in horrible pain ever since. There is nothing written about this soul deep pain in that is with me everyday. I cannot touch it, or sooth it. It aches from deep within. My quality of life has suffered. Nothing makes it better. I know I am not the only one.

    ReplyDelete
  8. I am almost one year out from a total Robotic assisted hysterectomy. I have had a terrible experience as well. I knew when I was being wheeled out of the hospital and could not sit down in the wheelchair that something was not right. I had multiple trips back to my Gynecologist where he had to burn scar tissue off of my vaginal cuff. I had a strange mass that I was sure was an infection. I had multiple urine tests because the burning was so bad. I ended up having a huge rush of pink fluid come out after 3 months. I was sent to two Urologists. Had testing for urethral Diverticuli...and I, too, was sent to PT. I do feel that the PT has helped some. My primary doctor told me she thought I was experiencing nerve pain. I inquired with my primary about being put on an anti-depressant because I had heard that a client of mine that had IBS was put on it to help with nerve pain. (IBS is apparently nerve related?) I was put on a small dose of Duloxetine and it has really helped with some of the burning, itching, stabbing... and sharp pains I was having. I still feel a lot of “pressure” or as if I have something in my vagina. This is all so weird. I agree that it is awful that Dr’s look at you as if they know what is wrong and don’t want to say what it is. I went to 3 specialists and then a new primary before someone finally leveled with me. My PT was absolutely excruciating at first. I honestly do not know how I hot through it. I have been diligent with my exercises and it has helped after about 3 months. I am curious if your PT was having you do kegals? Kegals are bad if you have a tight pelvic floor. You should have been having relaxation exercises and core strengthening exercises along with internal manual manipulation (trigger point massage). It’s all very weird but my symptoms are less than what they were before. I was also completely unable to have sex and my husband and I are starting to have some success with trying again (very carefully)after 10 months. Idk if any of this will help or if you tried it all too. I wish you the very best and hope for relief for you.

    ReplyDelete
    Replies
    1. It doesn't make sense much, but it helps just knowing that others out there understand. (Hence the popularity of support groups.) Thank you for your comment.

      Delete

Post a Comment

Welcome to The ICIE and thank you for commenting!

Note: If you are leaving a comment on this blog in an effort to advertise anything except your own valid topical blog or website, your comment will be marked as spam and will not be posted.

Popular posts from this blog

Marisol Maldonado "comes out" of the autoimmune closet with husband Rob Thomas' hit song & video "Her Diamonds" - check it out; it's way cool

Chronic Monday: How to say 'thank you' to our service people and how this relates to chronic illness