Nothing But Pain

[stenosis49]

Has anyone out there had a tot removal, by tot I mean trans obturator tape/mesh removed and have been left with the anchors either side on sits bone. Despite having this tape removed back in sept 2013 and taking pregabalin and amitriptyline for the nerve damage that was caused after the prolapse repair (bladder and rectum) in 2012. I continue to have more days than less dealing with my left side of my virginal Wall on fire / pain down my left leg like sciatica but its not that, I get a few days in between this where I almost feel pain free, not many though. Went through every procedure I was offered, pain management as well but still feel the same exact pain 5yrs later as I did after week 5 recovery back in 2012. Went through pals at that time but didn't get me anywhere. They then told me that the surgeon who did this surgery back then had now left the hospital and had no forwarding address, yeah right. Even tried to sue him but got knocked back after being told I had a good case. Sorry but even though I live with this awful pain every day I carnt imagine ever being free from it. Sorry for the rant

[Supernanny56]

I'm so sorry to hear about the pain you are suffering. I had the same operation in December and wish i never had it done. I've been left with pain and discomfort and cannot have a physical relationship with my husband as i feel as if i have a bulge inside the vagina. I'm feeling really down. I slipped a disc a couple of years ago and after the operation i was left with severe back pain numbness in my leg. I think like you that i will have to live like this for the rest of my life.

[stenosis49 in reply to Supernanny56]

Hi supernanny56,its good to hear from you. You say you had the same operation as me, was that a tot and prolapse repair at the same time. the tot was to hold the urethra up so I didn't wet myself when I coughed and laft etc. But it wasn't until my surgeon in London kindly removed this back in 2013 sept that she said it wasn't in straight and it was in to tight. She took a photo of it after she removed the dam thing but unfortunately she couldn't remove the arms as it would have caused me more pain than I suffer with now. I also think that because of this consistent pain with this procedure no one could begin to understand how this affected my life and my relationship with my husband just like yourself . Sadly my hubby of 27yrs went astray and I separated from him in august 2014. Now going through a divorce, so so sad. I blame this procedure was the cause of my marriage break up. I understand exactly where you are right now. it ruined my sex life, so angry at that time that even the medical staff don't know what you mean by continuous pain. I still love my husband though he obviously doesn't love me. End of an era sorry to say

[Supernanny56 in reply to stenosis49]

Hi

I am so sorry to hear your story. You don't expect to have an operation and then your life fall apart do you. I needed the op as i was fed up with wetting myself when I coughed, laughed or played with my grandchildren. I was also leaking poo which was so bloody awful and i was so self conscious. I had the mesh put in and my bowel prolaspe repaired as much as they could do it but that part wasn't a complete success and i still leak poo.

I don't set myself like i did before but still have to wear pads each day due to the leakage from my bowel. I have it. I'm 57 but feel a 100.

After they put the mesh in my bladder i felt as if i had a tampon in that was placed wrong. So uncomfortable.

If i knew then what i know now i would not have had it done.

I hope you get some comfort soon.

[stenosis49 in reply to Supernanny56]

Hi, ime so sorry to hear your post, have you given any thought to having a referral to a specialist consultant on the NH's. I cant mention her name I don't think but I do know she is one of very few surgeons in the country to remove mesh and probably repair your bowel. she is in London ,I know because I got my gp. to refer me to her on the NH's back in 2013. I had enough of going round in circles and getting nowhere until I joined messed up mesh support group who put up a list of very few surgeons who specialize in this field. I remember the same feeling as you have now, felt like a hard lump on the left side just inside my vagina it itched like crazy and burned like a red hot poker and no matter what you tried to do nothing would help. just had to get it out as it drove me in to insanity. Ime 53 but back then I hated my life just riddled with pain/burning/itching so bad. to my relief when I was referred to know that a particular person could remove this mesh finally. my problems started at week 5 of recovery so when I went for my 6week check up more like 8weeks I told the consultant of my pain etc. but just got told it wouldn't be the mesh, how wrong was she,i even got an appointment with the surgeon twice after this surgery and all he said was ime sorry for your pain and the idiot just prescribed a hormonal cream like that was going to do anything. the mesh was under the urethra under the vaginal wall nothing was going to soothe this. its not like thrush you can soothe the itching, blundering idiot he be. This mesh procedure is now an open scandal. was never told of these side effects just the run of the mill with any kind of surgery. was very angry towards that surgeon for months. how he ruined my life and never seemed to care he just passed me over to a urogynocologist who didn't know really what she was doing either. Sorry its a bit of a long read

[pixiewixie]

I am so sorry to hear your stories. There is very little that I can I say to help you stenosis49 & to those who replied to you. May I say from the bottom of my heart that I wish the very best for each of you. I understand the horror & despair of chronic pain. However when you were told something would relieve you & you have such expectations it is horrendous that the treatment has caused you all such great suffering in all aspects of your life. I hope against all the odds that there will be some medical relief for you in the not to distant future. My thoughts are with you & I wish you the very, very best. XX Pixiewixie

[stenosis49 in reply to pixiewixie]

Hi pixiewixie, thank you for your post, yes living with chronic pain is hard but keep taking my meds on time every time and it just keeps this horrific pain at bay almost anyway, still feel it but hate to think what its really like without the meds I take.

[Supernanny56]

I would like a second opinion. Like you Stenosis when i went back for my review i was told "sorry for your pain but it will get better with time. I was supposed to be discharged but they kept me on and reviewed me months later where the problem remains. I was given eastrogen pessaries and 4 applicators of different sizes that look like a vibrator and told to go home and practice as she examined me (and i felt great discomfort) and told me i have 'capacity' so need to persevere. I think she was thinking it's all in my mind. Tried to do what she suggested and have given up as i cant bear the discomfort. I couldn't get past the first size let alone any of the others. I have to go back in December for another review and fear they will discharge me then so that will be it.

[stenosis49 in reply to Supernanny56]

it depends on what you think you should do. if going by my experience I would definatley ask your gp to refer you to the lovely lady in London. I know its a bit of a treck but she knows her stuff and would hopefully be able to help you. what use were the peccaries and dilators when its the mesh probably and the lump feels like a tampon up there like you say could be scar tissue

[Supernanny56 in reply to stenosis49]

Thanks so much for your advice. I will definitely ask for a second opinion. How can i get the name of your doctor. She sounds amazing

[stenosis49 in reply to Supernanny56]

Ime sorry but we carnt mention any consultants/ medical centres on here, but if you search the internet for consultants who specialize in your medical problem in London you will hopefully find more details about her and she was interviewed on the TV about tvt and mesh problems. once again sorry for that

[Supernanny56 in reply to stenosis49]

No don't worry you have been so very helpful. Thank you x

[Mazzakay21 in reply to Supernanny56]

There are a few mesh Facebook groups you can join........sling the mesh, Scottish mesh Survivors, and welsh mesh Survivors. There’s a wealth of information in there and there are also files with removal surgeons. Good luck. I’ve had TOT removal in Scotland and haven’t been great since getting it out but I’m still glad it’s out!!