new to this site severe pain need help support

[survivor71]

Hello My name is Anissa

In June 2012 I had hysterectomy, retocyle and cystocle repair and a bladder sling put in. I was ok under 9 months ago. First thing I noticed was my uretha felt like someone was twisting it. Then, couple weeks later the inside of my vagina and uretha feels like knives are stabbing them. My lower bk kills me and bottom and groin area. This has gone on for 9 mths and counting. I already had anxiety and panic attacks. I have no life, I am married me and my teenagers and hubby live with my parents. I cant have sex, I figure that if i can handle a pelvic exam then I cant handle sex. Most doc were not listening couple months ago. Make a long story short The urologist thought I had ic. I dont. Sitting the worst pain ever then comes standing . I just went to pain management. they are thiniking it is the pudendal nerves that the sling is sitting on. i dont know how to spell that disease. But I cry every other day, I am phsically and emotionally past drained. The pain and all the stuff about the bladder sling has got me feeling i am gonna die. 3 docs have told me the pain is coming from where the slings sits. What ever that mean.

CAN YALL HELP ME UNDERSTAND THIS AND HELP ME NOT LOSE MY MIND AND NERVES.

THANKS

[April]

Anissa,

That all sounds very difficult. My primary symptom is burning, but I also get needle and knife stabbing sensations. So, many of your symptoms do sound like pn. What did the pain management (or other) doctor recommend as a treatment? Could the doctor recommend a physical therapist who is knowledgeable about pn? This site lists physical therapists who are pn aware, so you could also review the list to see if you live close to someone on the list. (You can see the link on the home page.) Lifestyle changes can also be helpful. You can try to lie down or recline as much as possible (I do that) to avoid irritating the nerve more. You can also see if ice reduces the pain. It is a lifesaver for me. I put 6-8 ice cubes in a ziplock bag and wrap a wet paper towel around it and put it in my underwear. I do this for extended periods and have not had any problems. You can also ask your doctor about medications that can calm the nerves a bit. I take nortriptyline and I used to take amitriptyline. You can review the treatment section of this website for information on medications. Keep us posted on how things go.

April

[stephanies]

Anissa,

If they are quite certain the problem is the sling, can it be removed and might this help with the pain?

Stephanies

[nyt]

Hi Anissa,

I am so sorry to hear about all of this. My story is somewhat similar to yours. I had a hysterectomy and bladder sling and have never been the same since. It took two surgeries to remove the bladder sling. The right side was removed by Dr. Blaivais in New York City. By the time he removed the sling I could feel it like a rope inside, difficulty voiding, couldn't have sex because it was too painful, couldn't sit, urethra burning etc. Then I had the left side removed by Dr. Hibner about 3 years after the right side because slowly the left side started to bother me, I could actually feel it pull when I would sit to go to the bathroom. Having the sling removed did help with the pain and I could void again. There have been cases from cystocele and rectocele repairs that the sutures from the mesh kits were found through the pudendal nerve.

I highly recommend you find a specialist that can evaluate whether your problem is from the mesh either the bladder sling or mesh from one of the other repairs. The International Pelvic Pain Society has a website that you can find doctors that specialize in pelvic pain and you might be able to find someone in your area. I had to travel to have my sling removed as there was no one that was closer than 5 hours that had any experience in removing slings. That was 9 years ago I had the right side removed and I'm sure more doctors are gaining experience in removing the slings when there is a complication.

Feel free to PM me.