Vaginal Sling (TVT) Complications

I am so so sorry. Unfortunately, I can relate - I have been experiencing chronic pelvic pain for 10 years. I too am with TAPMI. They have yet to figure out what is causing my pain. I also have extreme urinary urgency - sometimes having to go every 15 minutes because it's just too painful to hold.
I wish I had a suggestion for you but it sounds like you've done everything I've done. Have you seen an osteopath? some people swear by them.
I'm feeling that there us some connection with exterior colon scarring from Ulcerative Colitis flares touching my bladder and urethra.
My life too has been drastically impacted - from having a very public career in the city to now having a very small life in the country.

@shauna18 I am very sorry to hear that you too are dealing with chronic pelvic pain and especially for so long with no answers. I too went from a career of working for a brokerage firm where I was an executive team member to now honestly feeling useless because I want to work and physically can’t. It’s not even the money, it’s for my mental health and I enjoyed what I did and the confidence it brought me because I was good at it.

I don’t feel like I get any answers from TAPMI other than being told this is something I need to accept will be my life or take more meds to manage the pain. I’m not willing to accept there’s nothing that can be done. I was put in this situation because I listened to my doctors and specialists tell me I needed to do this, I proceeded and now I’m left to feel like I’m standing in a desert alone fighting with no light in sight. This surgery was to change my life for the better not be life altering for the worse. I rather have had incontinence issues and be pissing myself all the time then not be able to walk or be physically active with my kids like I used to be. Not to mention the emotional impact that comes with it when my kids want to do something and mom stays home while they all go because I don’t want to hold them back.

I find I am constantly researching or looking for new treatment methods. I also was never a pill popper and only ever took Advil for migraines and I’d tell you the meds they prescribe don’t even help. The CBD oil I now take, takes the edge off more. I tried Osteo and truthfully it did nothing. The combo of physio and chiro multiple times weekly helps more but the out of pocket expenses that comes with this doesn’t. Thank you for reaching out and sharing your journey.

We are sisters in pain.
Has anyone had all the mesh removed.
I found a doctor in Surrey, Canada that is specially trained to do it.
Before my Rheumatologist put me on a low dose of methotrexate ( a cancer drug) I could barely walk to the kitchen or the bathroom after I went back to work. The mesh in the TVT was sold as being hypoallergenic but when the glycol melts and the sharp edges of the mesh start perpetrating surrounding organs. There are 3 components that they use to make TVT, I got tested by my allergist and Im allergic to 2 of them. I also had pain in my coycx. It's gone since I had the mesh removed. I used to get pain blocks from our pain clinic . They used radio waves and continuous exrays to kill the nerves. The nerves grow back in aprox 1 year. I used st sit on ice packs.
Hun keep fighting and considering other option than what you doctors suggest.
They don't live in your body, you do!
Luv
Maggie

@trisha85, you have been through a lot and I imagine every new thing you try is exhausting. I am so impressed by your ability to go through this and manage all that goes along with it. Kuddos!

I am a patient at Mayo Clinic. I was told when I got there in 2022 they knew what was happening but weren’t sure what to do about it. They have taken an integrative approach effective for my systemic symptoms. It would be about protecting my heart then taking one symptom at a time, and that is exactly what we have been doing. I was it would be a marathon. Like you, I have been going through a marathon. Everything my care team has done has incrementally helped my quality of life, also handle with extreme compassion. I do not want to think of where I would be with them.

It has been difficult to turn into a person I do not recognize. Like you the physical part is not all that is affected. Mind, body and spirit all deal with the same experience. My approach has been to only focus on the next best decision then work that direction. It is the only way I know of to make progress. I say this to encourage you to keep going. You can do this!

Not sure if you are open to yet another try, but I will provide a link to contact Mayo Clinic for an appointment. I imagine they may be able to tell you with pretty good certainty if they think they could help you without you making the trip, rather by reviewing your testing that has been done already.

What is your biggest daily challenge? Have you found anything that provides relief, or you think helps you?

@jlharsh Thank you so much for the encouragement, understanding and support. I am happy to hear that the team at the Mayo clinic has been able to help you. I often wondered if this is the next thing I need to explore. It’s great that they have you on a path with a focus, approach and next steps. I feel like I have never had this from my medical team. They have just constantly told me I need to accept things as they are. Only my physiotherapist and chiropractor have been able to give me any type of a path which has been frequent treatments help but don’t solve or a provide long term solution. They just make it more tolerable which I can accept short term but I’m not ready to stop looking for answers or trying new things. Even though some days are harder than others I keep going and keep trying. I have found that although I was always a planner I now take everyday as it comes and listen to my body. If it’s a bad day, I now treat it as that and if it means not accomplishing what I wanted to, so be it. That’s probably been the hardest in addition to admitting I physically can’t do what I use to be able to do. I moved out on my own at 19 and have always been independent and quite stubborn wanting to do everything on my own and rely on no one so having to change that and accept help has been hard. I’d say the biggest challenge physically is my mobility and range of motion being limited. Some days I just don’t feel steady on my feet. Aside from that it’s missing my kids sports or if I have to drive them it’s when I have to sit in the car because I can’t handle anything else can’t be fully present as I use to be. It’s the “mom guilt”. Aside from that, I’d say it’s being frustrated because every test, image or doctors appointment shows nothing or accomplishes nothing. Sometimes I feel like am I just creating this because they find nothing and thankful my physio and Chiro always tell me “this is real don’t feel otherwise”. It’s just frustrating. Thank you again for reaching out. It means a lot!

@trisha85 You already have good input from sisters-in-pain, @mackaymouse and @shauna18 with similar challenges. Quite a bit of what you comment feels familiar to me, as well. I admire your ability to understand what is happening with you as well as your drive and commitment to live the best life you can today and every day. You’ve got this.

I realize I did not include the link to Mayo Clinic appointments. Here it is: http://mayocl.in/1mtmR63

Like you, I was not able to get the care I needed locally. Not making progress is what led me to Mayo Clinic. It sounds like you have a wonderful physiotherapist and chiropractor helping you. This makes me think of Physical Medicine and Rehabilitation at Mayo Cinic in Rochester. They work with other departments as needed for individual patients. You may want to review more about them or even share the information with your Physio and Chiro. I guess, more heads are better than one!
-Mayo Clinic Physical Medicine and Rehabilitation: https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/overview/ovc-20467039

You mention independence, productivity and guilt. At least that what stands out to me that I relate to. I have been trying to look at a positive side of not having resources to do all I want to do. It is an opportunity to regroup and decide what is most important. I realize I do not want to be the person that does it all. I want to be intentional and feel good about what I do decide to do.

I would like to stay connected with you and stay up to date on your progress. Will you come back and comment as you have thoughts/takes steps forward?

You stated your biggest challenge right now is minute and range of motion. Do you think they could be improved, do you want to pursue that? Have you considered adding someone to talk to, maybe a relationship, or life coach to help you figure out what the new you will look like?

@mackaymouse - Never did I even think it could have been an allergy nor has this ever surfaced in any conversations I have had with any of the specialists. When I questioned removal of the sling, I was told that because the pain is only one sided on the left and not the right there was no reason to remove it especially since the incontinence issues resolved. In fact, the one urologist I saw after the left arm was removed suggested it shouldn’t have been completed after two others said that it had to be. He suggested that the issue stemmed from the psoas muscle issue yet since that consultation in July 2024, the psoas muscle has never been mentioned as a problem. I have been told that the issues with the hip bursa, coccyx, and SI joint disfunction is all secondary based on the primary source which to date no one can tell me what that is. The coccyx provides me with a lot of pain on a daily basis, especially during pelvic floor treatments where I experience extreme spasms down the leg. Funny enough, today, I was at the chiropractor, and she pushed down on one section between the groin and inner thigh, and I jumped and screamed. I went into my car after the appointment and literally cried out of frustration because I can’t understand how none of the imaging or scans show anything wrong when I know my body and I know there’s a problem. I don’t even feel anger or stress about it if that makes any sense, I just feel pure frustration. Thank you for the suggestion regarding the radio waves as TAPMI suggested that this was not a route we could go because since the blocks performed have not lasted more than three months, completing the radio waves would not help. My chiropractor has suggested recently that laser might be an option and is consulting with her colleague on this, based on my situation to see if this is something we can try. Do you mind sharing the name of the doctor in Surrey? Really appreciate you reaching out.

@jlharsh - absolutely, I am happy to keep you updated on my next steps and appreciate you sending the link. In fact today, I submitted a request to the Mayo Clinic to see if they will review my case. I was impressed with how quickly the process was started and all the emails I was receiving. I am hoping that after the team reviews, the reports I provided with all findings and imaging they are able to shed some light. I have been told that the mobility issues and decreased range in motion is not something anybody can guarantee me will change. With the exception of my physiotherapist and chiropractor who tell me to stay optimistic everyone else has just suggested I have been proactive and done everything I could and just need to accept that. The situation is what it is. I am currently in a frame of mind where I would like to explore what the new normal will look like and incorporate a couple of hours of work in a week to start which my employer is happy to work towards with me while understanding my limitations. I cannot complain from that stance as my work has been very understanding during this time. Well, I am trying to plan what that might look like and what I want my life to look like going forward, I still do not want to give up on finding answers. You said something that really stood out to me “It is an opportunity to regroup and decide what is most important. I realize I do not want to be the person that does it all. I want to be intentional and feel good about what I do decide to”. I can relate to this as I recently sent to my husband “I’m tired of being the people pleaser and trying to do it all and make everybody happy yet I’m not making myself happy. I want to live my life going forward to do what I want not what I think is expected of me by everybody else”. This has been a hard one to learn and I can tell you I’m still learning it, but I now do say no more so than ever before. Appreciate you @jlharsh.

@trisha85
Dr. Darren Lazare in Surrey, B.C..
My surgery was done at the Jim Pattison Hospital in Surrey. He brought in a gynecologist, his top resident and there must have been 10 people and multiple computer screens in the operating theatre. He preformed 2 laparoscopies, 1 cystoscopy, 1 urethral dilation and removed all the remaining infected mesh. The pain clinic at the hospital is fabulous.
If you decide to come here, I have a spare room and can take you for your appts. Us sistas in pain need to stick together.

I myself had a hysterectomy in my late 40’s, and the last two years I’ve had two vaginal surgeries. One for anterior , the second for posterior prolapse.
I also have a disc bulge pressing on traversing right S1 nerve root.
Also pain which may be pudendal neuropathy. I’ve been to two urogynaecologists , a pain doctor, two neurologists and have yet to find any relief.
I’m not to bad in the mornings, but by afternoons I’m in quite a bit of pain. I’m hoping to find someone or something that can help me soon. I’m sending hugs your way as well. I did not expect my life at 63 to be this way either 😢.