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I am NEW-Transvaginal Mesh Horror Story
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seekingreliefruby posted:
Hi all, I had a Transvaginal Mesh installed July 2007 for bladder incontinence and woke up with severe pelvic and lower back pain. The pain continued to get progressively worse over time and spread throughout different areas of my body. Not only was I experiencing pain, but also numbness, weakness and heaviness to limbs. I have suffered from chronic pain since. The mesh was removed during one of my 3 additional corrective surgeries. My last surgery was last December. My life has been turned upside down like many of yours. I no longer work and depend on medications just to function daily.

My question to all is, do you sleep during the day? Has this become part of your life? Like a forced sleep that you cannot shake? I do! But not daily. Everyday is a different day, although I am taking the same medication daily. After sleeping 6 hours at night, I can wake up feeling exhausted and I have to sleep. At times, anywhere from 3 to 6 hours. Only to feel exhausted when I wake.

Changing topics- I am in Southern California, the LA area.

Ruby
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Pony8 responded:
Hi Ruby, I'm Patti from NC. I have learned something this AM and that is that I am not the only one who has her nights and days mixed up. You're the first one in the year that I have been dealing with Chronic Fatigue and Fibro. that has said anything about this. I never paid much attention to it because my husband is at work all day and if I sleep, I don't notice the loneliness as much. Then I'm up all night. Not much else I can do because of the severe pain I have in my back and the horrible fatigue. Like you, I sleep, then, wake up feeling like I need to go back to bed. Talk about a roller coaster ride.

I have never heard of the mesh you spoke of. But, I'm sorry you have so many problems as a result of it.

My husband tries so hard to understand all of this and is a priceless jewel when it comes to taking care of me. I made the mistake of letting Jerry, my hubby, go with me to my last doctors visit. Never again. He got an ear full of make her do more, don't wait on her or do things she should be able to do, etc. etc. Trust me, he only tried it once and after I got through "explaining" to him why I couldn't do, whatever, he never suggested it again. I just told him all doctors, themselves, don't understand what you have and, frankly, in my opinion don't want to.

I didn't mean to talk your ear off, but I have been away from the site for a year or so and I guess I try to be to thorough.

I surely hope and pray that you and your docs. can work out what you need in regard to your bladder situation as well as your Fibro.

By the way, mine all started after Mono also.

If you want to chat further please feel free to check my email profile. You will be in my prayers and I don't say that lightly.
I am a strong believer. God bless you.
Patricia in NC
Patti in NC

May a happy, pain free day stroll into your tomorrow!!
 
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booch007 responded:
Hi, sorry all this happened to you. Would love to see you get a sleep study to see how you are during the night. If your breathing is not right and you have periods of not breathing, it can give the symptom of exhaustion in the morning.

Narcolepsy also can give you this....but I am wondering if "sleep apnea" has a hold on you and you need a CPap machine (easy fix) just need the diagnosis.

So, I see a sleep study in your future...talk to your doctor and tell him all this. There are centers just for this issue. More and more people are in trouble with this lack of restful sleep.

Good luck, and I hope most of the problems are behind you now that they removed the mesh. My girlfriend had her bladder puntured and spent months with a catheter....it seem to be a trcky surgery for some.

Hope today is a better day. Nancy B
 
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dollbug responded:
Hello Ruby and Patti and welcome...sorry that you are having sleep issues...I do know though that you can get your days and nights mixed up and this is not a good thing...I do not take any naps during the day unless I am so sick that I can not function...I also have chronic fatigue and I stay very tired...in fact, I am always tired....never have a *rested feeling*...when I first got sick I have all sorts of health issues and had to dig my way through all of them before I finally got better...

I now have the FM pain under control by taking vitamins and supplements...but I have found nothing to help with the fatigue...

I do sleep in a recliner due to the additional back pain that I have...and I sleep on pillows...this is the only way that I have found to ease my back pain any and being so stiff...I have also found that taking a hot shower at night using lavender bath salts in a stopped up drain helps to relax my body so that I can sleep better...

I do hope you both will check out the info under *tips* and *resources* that you will find to the right of this page...be sure and read the *member toolbox* as you will surely find some other good tools there to try..

Vitamin D....have you had your Vitamin D level checked....if not, then I hope that you will speak to your doctor the next time you go in....low Vitamin D can cause additional pain for some of us...(it did for me...as my level was so very low)..and it can also affect other illnesses as well..

I hope you both will soon find something that will help you both cope better..

Take care and good luck..


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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rudyandirmouse responded:
Hello Ruby and Patti and welcome. My name is Linda R and Ruby, I used to live in the San Fernando Valley/ Sun Valley, Ca up until 19 years ago. My DH transferred to Spring Hill, Tennessee to work for the Saturn Corp ( now GM ) and I left family and dear friends back in the Valley. DH and I do plan to start spend winter's there Jan- thru mid March starting in 2013.

Ruby am so sorry that you have and have had so much trouble with having the Trans vaginal Mesh. Years ago it did sound like a God send for those with incontinence issues. It's a shame that now it turns out it does more harm than good.

As for your question: do those with fibro sleep during the day? No I can't say that I do unless I have a cold or other medical issue that needs rest during the day. Fibro makes one tired and sluggish and some of us that are on high doses of medication may sleep longer or some time during the day, but over all it's not a problem for me.

Not being able to sleep usually is the problem for those of us with fibro. A good night's sleep eludes most of us most of the time. We either can't fall asleep or we wake up very early. A nap in the day time is helpful to some, but for most we are sleep deprived, sluggish and grumpy.

Pattie sorry you have your days mixed up and also that your hubby got an ear full. Most hubby's don't get fibro anyway, your 'helpful' doctor sure help matters. As for my hubby he gets it, but not. Most don't anyway. I have had the fibro DX for over 30 years so he's just gotten used to me when I'm in a flare. He's helpful but honestly I try to do for myself so fibro doesn't take my day away from me.

Patti and Ruby, I hope to see you here more often now that you've found us here.
Gentle hugs out to each of you.
Linda R.
 
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Anon_10089 responded:
Hello-

I have had sleep problems and FM for most of my life. I often sleep during the day. Experts say that to sleep better at night, we should avoid naps. I understand the thinking behind this. But I find that if I don't nap, I still sleep terribly at night. For me, napping is the only to kind of keep up with sleep. I will usually take a nap in the afternoon and I find that this helps me be somewhat productive in the evening.

I'm from Northern California, by the way.
 
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Fibrohag58 responded:
Hi Ruby... Wow... do I relate to your problem. I ALSO had transvaginal mesh installed in 2007. Two meshes, one TVT sling for bladder and one Gynecare prolift for vaginal prolapse. I have had ALL of the symptoms you mention as well as others.?[br>
I ALSO suffer from fibromyalgia. But I wonder... is it really fibro or are all my fibro symptoms actually CAUSED by this mesh? I have recently read that the mesh can cause lower back pain, neurological symptoms, and pain in other areas besides the pelvic region. I am wondering if anyone else received a fibro diagnosis FOLLOWING a mesh surgery??[br>
I have had 2 surgeries to remove the meshes, the most recent this april. Following the last surgery I have had some relief from the incontinence but the back, vaginal, pelvic pain continues and I am scheduled for something called "pelvic floor therapy"?[br>
This forced sleep thing affects me too. It comes and goes. I cannot control it... it is like there is NO warning and then suddenly I am so completely exhausted that I cannot keep my eyes open and must sleep. Happens at anytime throughout the day and it is maddening. And my sleep schedule is just crazy. In addition to falling asleep "on command" I also have periods where the pain keeps me up. ?It is horrible[br>
My life has also been turned upside down. I've lost my home of 18 years, my job AND my career (I can no longer work and am filing for disability), my credit, my source of income... and worse than all that... MY HEALTH. I am in daily pain, constant fatigue, have multiple areas of numbness and tingling and nerve pain, and so many more horrible symptoms that keep me from doing the things I love. AND sex with ?my husband? Forget that. Even a simple pelvic exam is excrutiatingly painful.[br>
If you haven't already, contact a lawyer regarding your mesh. You most definitely have a claim for damages. When was your fibro diagnosed? After the surgery?[br>
 
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Anon_2912 replied to Fibrohag58's response:
I know all about the pain from the mesh...I had one put in back in 2009 & just got it removed this past April.

However, I am back to my normal self as far as the pelvic pain goes. I do have intermitten pain, but not like before. The surgeon who removed it could not get all the mesh out and the sling was put in too tight when it was put it causing to be painful & when had intercourse the object was being pushed into my uterus....NOT ANY FUN......

So glad I got it out....
 
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BPL1969 responded:
Hi Everyone,
I too have have had severe vaginal pain since having mesh surgery, but for rectal prolapse a year ago. My surgeon keeps telling me there is no pelvic floor reasoning for my symptoms since she has done every test, MRI, CT scans and even PT evaluations on me. I finally saw a gynocologist last week who thinks all of my symptoms are mesh related and muscle related. She feels it is fibromyalgia related and has referred me to a gyno who specializes in fibro for the just the pelvic floor area. I don't see him 'til Sept. but am hoping and praying I can get in sooner. Since I had a complete hysterectomy nine years ago, I was no longer taking estrogen. The gyno I saw did feel if I started some estrogen cream, it could help some of my pain. I just started so of course have not seen much of a difference and am not too hopeful.

I do think my Fibro has gotten much worse since the mesh surgery. I know the pain I feel vaginally causes me so much stress and anxiety since it wasn't there prior to the surgery. I know Fibro patients can have vaginal pain, but this severe is just crazy. I am on 3600 mg of Gabapentin a day and 1200 of Cymbalta and it doesn't even touch the pain I am talking about. Neither dose a heavy dose of Percocet.

Sleeping varies from day to day. Some night I fall asleep on the couch and that is better then going to bed. The severe migraines usually wake me up by 3 AM and I can't sleep anyway. Usually by Friday afternoon I can't function anymore and am ready for bed by 4PM since I make myself keep moving all week long. Not smart, I know, but it is what I do for my family and I work through the pain better I guess. If I don't work through the pain, I just want to scream and believe me, there are days when I do, especially when I can't use my arms.

Ruby, my thoughts and prayers are with you and with all of you who read this. I hope to post more regularly. I do feel the need to be here, but at times I am still in denial and it is hard to accept...does this make sense?

I am in the Akron/Cleveland, OH Area

Big hugs to you all,
Brenda
 
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Fibrohag58 replied to BPL1969's response:
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 WI
 
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BPL1969 replied to Fibrohag58's response:
Hi Karin,
Thank you so much for you reply and my heart goes out to you too. I am sorry to hear you have had to endure this suffering as well. I do see a urogynecologist. That is who my surgeon referred me to, but she only recommended estrogen cream. I did see another urogynecologist last week who did say she felt the mesh could be causing my pain. In Sept. I will be seeing what I am told an "expert" in this area , but I am calling every week to see if I can get in sooner because Sept is too far away to keep living this way. Gosh, hard to believe it has been a year already.
Thank you again for your reply and I wish you all the best.
My thoughts and prayers are with you as well...
Hugs, Brenda
 
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seekingreliefruby replied to Fibrohag58's response:
Hi there, absolutely! All of my medical conditions were diagnosed after my mesh surgery. I never experienced a headache prior to that day. One thing I also forgot to mention is that during the same surgery, I also had a rectocele.

My surgeon which removed my mesh would like to perform an additional bladder surgery for incontinence using my own tissue. Although I want to have faith in him, I am terrified of the thought of another surgery. He feels that if he gets my bladder working properly that this may improve my overall pain level, leakage (of course), and quality of life as it pertains to that area. Thoughts?
 
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seekingreliefruby replied to BPL1969's response:
Hi Brenda, thank you...

I too, take Cymbalta and Lyrica however, I absolutely needed something else for the breakthrough pain. The downside is that you would be getting into prescription narcotics, but they work!!
I take Topamax for my migraines and it works. I do not believe this is a narcotic. I also need to take percocet as needed. This is a narcotic. I'm taking something that is supposed to work around the clock, Fentenyl Patch. You change the patch every 3 days and it time releases the medication into your blood stream.

If anything at all, please speak with your doctor about Topamax. It works wonders for migrains!

It makes complete sense to be in denial. At times I believe that this is all a nightmare and I will be waking up soon. Other times, I believe that I will come out of this shell like a movie because this is not "me". I had a career, I was self sufficient.

My thoughts and prayers are with you and all of you who suffer our condition. Big hugs to you Brenda...

Ruby
 
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BPL1969 replied to seekingreliefruby's response:
Hi Ruby,

I too take Topamax for migraines. My dose was cut due to cognitive issues, but was just increased this week due to too many break through migraines at night. I can deal with the cognitive I guess over the nightly migraines and no sleep.

I have been having so much vaginal pain and stomach pain since Monday that I saw another urogyno today for another opinion. She also thinks it is the MESH!!! My husband and I are so scared. This doc said that after we meet with the surgeon(who did my recotal prolapse surgery) and the urogyno that works with the surgeon on Tuesday and if we don't get any answers, she will refer us to a urogyno in the Akron area.

We feel another dark cloud hangs over us, but we have had many and will see the sunshine soon. Our faith is strong and God will see us through. Thank you so much for being here to listen, but I am so sorry we had to meet this way.

Blessings and hugs to you and everyone who reads this too,
Brenda
 
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Fibrohag58 responded:
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.

Karin in Wisconsin


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