Just curious... Who installed your mesh and what kind? I had two: Gynecare Complete Profift for bladder/uterine/rectal prolapse and dr talked me into also having a gynecare tvt sling put in as a "preventative measure" . Both caused pain and major problems for meView Thread
OMG... more problems with the mesh. I tried the vaginal therapy and it didn't help. I felt a little better after the last revisions surgery... at first... and the incontinence was actually nearly GONE for a short time. And then it all came back and the pain came back with a vengeance. Waking me up in the middle of the night even sometimes. Then I found things poking out of me while in the shower... and realized I had a recurrent rectocele. Ugh. Now I need even MORE surgery. The Dr has to fix the rectocele but in addition, she needs to remove my uterus (she thinks it is pushing on the mesh). She did the 1st surgery vaginally and couldn't reach the mesh at the top and think that is what is causing my current problems. So she is going in through my stomach and removing the mesh at the top there and also will need to do some work on my bladder (not sure what...). UGH! I am so sick of this. Will it ever end or will this mesh cause me problems the rest of my life. Even if she gets it all, she tells me that alot of my pain is from the scar tissue that is left from the multiple surgeries. I hope you are feeling better than I and have better success in solving you mesh problems. The worst part is they found I have some other health problems that will delay the surgery and also I have to go see my mother who is very ill before she passes and have to choose pain/mom or less pain/surgery. Mom is almost 90 and suffering from lung cancer. I think I'll just have to deal with the pain and incontinence (which has come back as bad as ever). My sleep problems are much better!!!! View Thread
Forgot to mention... I too had thoughts of suicide. Off and on for a few years now. Since being diagnosed with fibro, it seems that new symptoms keep popping up or old ones resurface with a vengeance. I go from doing pretty OK to a horrible flare like you are going through. And the worst part has been being told "you need to learn your limitations... you just can't do that anymore...."
You feel like you've lost so much. But I conquered that (well, for the most part... still get depressed off and on, but it's under control)... conquered it by seeking out a good therapist to help me cope with the feelings and trying to focus on the positives. What I CAN do. Not what I cannot. And to try new methods of coping with pain. Because honestly those pain meds just don't work like they used to. Body developed a tolerance. But I try to give thanks for my family, my children, my husband and this beautiful world. And focus on the good and try not to dwell on the bad stuff or the pain.
Hope you feel better soon. My heart goes out to youView Thread
cathrynme... I am so so sorry you are going through this. I can sympathize with your distress. I have also often felt like just giving up. Some days are better than others... physically AND mentally. It's so hard to deal with this, especially when most of the people you know and love just DON'T understand what you are going through. You can feel so very along with this disease.
But hang in there!!!! Remember, a flare is temporary. Try to keep as positive an attitude as you can. Don't think about what you can't do right now... try to find something you CAN do... even it is only enjoying the scenery outside your window. Sometimes I do that... and try to gather as much strength as I can from the beauty in the world God gave us. And sometimes, I know, the pain is so bad that you can't even do that... but we are all here for you and know what you are going through.
Even when you feel like giving up and just can't take anymore, remember... tomorrow is another day. I've been through menopause and it is now, finally, thankfully OVER!!!! And during menopause I remember that it was hard to be strong. Hard to be happy... I was so depressed. Menopause causes so many stupid hormonal changes in our bodies and that affects our minds by making us depressed and crabby and just not as emotionally strong as we usually are.
But as a survivor of the dreaded menopause, I can tell you... IT WILL GET BETTER. For me, all symptoms of menopause are completely gone. The only one that hung on for a while was hot flashes. I still have night sweats, but that is probably the fibro.
Hang in there, count the blessings you have and look forward to brighter days. Honestly, once the menopause eases up and eventually just goes away, you will feel so much better. I did.
Oh, you bring up the dreaded cognitive issues. It's such a tradeoff with the side effects of meds, isn't it?
But I am blessed with cognitive problems (fibro fog) with or without meds. I did find that Cymbalta REALLY helped with this. It was like taking a "smart" pill. I had some problems with side effects and stopped taking it.
Started having a pretty significant decrease in cognitive ability and an increase in pain and nerve symptoms so I went back on it, just at a smaller dose.
Side effects? Relieve symptoms? We have to choose the lesser of two evils!
Have you had your mesh removed yet? Are you feeling any better hon?View Thread
Hope you are feeling better and hope you found a dr who will help you with your mesh problems. I had my revision surgery for the mesh in April and it was better for a while and now I have more pain and the prolapse came back so yet another surgery. I have heard there is a specialist in California who does excellent work on mesh removals and has been actually able to remove ALL the mesh for some ladies. That is what i need. Even though they've been in there twice to get it out, it is hard to do and the remaining mesh is still causing me alot of trouble. Sometimes it feels as if I am being poked with a sharp knife! (the mesh eroding? I'll find out Oct 1 when I see my urogynie). And this aching pain ... ugh. mesh is EVIL!View Thread
Ruby.... I posted a while ago regarding having the transvaginal mesh and fibro too. I had all the same symptoms as you including the sleep problem. Since my last post, however, the sleep issue has gotten SO SO much worse.
I fell asleep at a dinner for my daughter's birthday. No real warning other than I felt a little tired and then BAM! I was asleep. Didn't even realize it was happening. Happened at the doctor's office while in the waiting room. At all weird and inappropriate times of the day. And then I fell asleep in the middle of the afternoon while DRIVING!!!!
I knew I was getting tired, but saw my turn to my apartment complex just a few blocks away so thought, no problem, almost there. The next thing I knew I was waking up driving on the lawn with my tires hugging the side of the curb. WOW. scary. Doc told me not to drive (of course!!! I'm so lucky I didn't hurt anyone or myself) and they did a sleep study.
All they found is that I'm not getting enough oxygen at night and they've scheduled a pulmonary function test. Weird. The fibro and transvaginal mesh problems have stolen so much from me already. Now driving? Hopefully they can find and fix the problem.
BUT I did some research in my "fibro/myofascial pain syndrome" library and found that shallow breathing is not uncommon in fibro. So that may be all it is. But would probably mean I need oxygen at night. No biggie I guess.
I asked the dr. how this could cause me to suddenly fall asleep in the middle of the day... going from not really tired to instantly tired and going into a forced sleep in a matter of minute and sometimes SECONDS! Thought I was narcoleptic! But sleep study did not indicate that. She said the oxygen deprivation might be causing this but I'm still not convinced.
Also have the weirdest sleep pattern. Some days need three naps. After sleeping 8-10 hours (when pain levels let me do so). Some days can only sleep 2-6 hours and then need no naps the next day.
I wonder if the fibro and the pain are just causing us to become really messed up in our natural sleep cycles and our bodies are reacting by forcing the needed sleep on us? Or we have confused our bodies by having no set schedule because our sleep can be ruled by pain levels. I don't know. But I sure sympathize with you.
Hi Brenda! I think you should consider going to see an urogynecologist who may be able to remove your mesh. I think the mesh itself may be your problem![br> I know many gynecologists and urogynocologists will not admit the mesh is the problem. That is what happened to me. The dr. who put my mesh in told me there is NO WAY it could be the surgery or the mesh that was causing my pain and incontinence until finally I got so desperate I found another doctor who immediately diagnosed the problem and removed the mesh (as much as they could). I still have pain but it has improved greatly. My incontinence is GONE and was obviously caused by this surgery. THese mesh products are dangerous. Check out the FDA's website and search for transvaginal mesh. They have serious warnings about these products and there is a list of symptoms from the mesh. [br> You should not be feeling this vaginal pain just because of fibro. IT IS the mesh. Please see a doctor. I know of a great one in Wisconsin, but I'm sure there are some in Ohio who may be able to help you. But I fear until you have that mesh removed, your pain will not only continue, but will escalate and eventually could even erode and cause you serious damage. This is what happened to me and so many other women.[br> My mesh was recently recalled off the market and many other manufacturers and pulling theirs as well. The mesh was never fully tested and we are their guinea pigs. [br> TO RUBY AND BRENDA BOTH... My heart goes out to you. IT's not enough that we all have to suffer from fibro, but with the additional pain and frustration caused by defective meshes, it is just horrible. Hang in there ladies. My thoughts and prayers are with you...[br> Karin in WIView Thread