MY TRANSVAGINAL MESH NIGHTMARE
I know its long…but here is my story…
Hello, my name is Michelle Hedgcoth and I suffer from complications from a Transvaginal Mesh Implant. In 2009, my Primary Physician Internal Medicine, discovered during a routine pap, that my vaginal wall was collapsing onto my colon, causing severe constipation. This was happening because of an episiotomy that wasn’t stitched up after the birth of my third child. It was recommended that I see a urogynocologist immediately. After seeing the specialist, it was recommended that I needed to have the surgery.
This option was the only option advised to me at this time to correct and support my vaginal wall. In May of 2009, I had the surgery and everything seemed to be ok for a year and a half, that’s when all hell broke loose and trust me, it seems everything happened so fast, I had no idea what I was going to have to deal with.
Please keep in mind, I just started to talk publically about what I have been through, and currently what I am going through now. I haven’t talked about everything I have been through and the best way to describe everything is to put them into different sections. Some of these area are very Sensitive and Emotional to talk about, but if it can help another mesh patient than I am all for telling my story.
2. Physician Instructions from 2010 to present
5. Now and Then
Symptoms and Physician Instructions
In November of 2010 is when my horror started to come to life. I was currently in a previous relationship with another man at the time my symptoms started. During intercourse (the first intimate experience we had together), it was discovered that I still had undissolved stitches in my vaginal wall and my previous partner felt it. Concerned about infections or what was going on, I immediately made an appointment with my Urogynocologist that performed my surgery.
My urogynocologist took out the stitches, which is extremely painful, this happened at the doctors office, with no pain medication, was advised of my home care, and said no intercourse for 6 weeks. I didn’t make it to 6 weeks when I knew something was wrong. I could tell that I had some sort of vaginal infection based on white discharge in my panties, so back to the doctor I went. Keep in mind that I was working full time and was a mother with 3 kids to raise and I had a very busy life, so this nightmare became worse over time and it was the start of a long term, a lifetime problem.
At each visit I was taken off work for at 3 days to recover from the pain of having mesh pulled out from my vagina, prescriptions, and (of course still no intercourse). This continued to go on for close to 11 months and I developed allergies not just to medications, but also to shellfish and certain antibiotics, which was becoming harder and harder to treat my infections. I actually broke out in hives, had my throat close up and my body was really starting to change, the early years of this lifetime nightmare, was some of the worst days of my life. I was bloated all the time, severe pelvic pain, and infections, it seemed it was never going to stop. I was constantly in the hospital to treat pain and severe constipation. I had opioid induced constipation, however the pain was so bad, it still sent to the hospital by ambulance.
By the end of 2012, I found out through my employer that my health insurance was changing from Blue Cross/Blue Shield, HMO to Kaiser HMO due to expensive costs for the company and this lead to me moving over the Kaiser HMO starting in January of 2012. That meant, no more specialist appointments, no more same day appointments, having to wait weeks, or even months, to see doctors. My world just shifted and the worst is still yet to come.
I was very devastated and scared of changing because of what I just went through, now I have lost my doctor of 10 plus years and also my urogynocologist that performed my surgery. In August of 2011 my Physician told me I was healed finally and everything should be ok, and I thought everything was fine, I was so wrong. I immediately made an appointment with the women’s health department at Kaiser in January 2013.
I saw a nurse practitioner to do a wellness check on my vaginal wall and see how things are going. To my surprise, it had somehow reopened again inside my vaginal wall, pain is insane, and I was once again referred to a urogynocologist within the Kaiser Network, it would take almost 2 months before I could see this doctor and all the while, I am exposed inside my vaginal wall.
I had been with my Internal Medicine Physician (BC/BS), for 10 years and I really don’t like to change anything at all, especially when it comes to medical things. It was really shocking and scary to start all over again with new doctors. One problem, getting an appointment with the only Urogynocologist for Kaiser in San Joaquin county at the time and had a 60 day min wait time and the doctor was right here in Stockton, CA. I was at work when I got the call and trust me when I tell you, I suffered a lot during this time. I was still trying to work, and finally I got to see the urogynocologist physician, it was highly recommended that I have a revisional surgery as soon as possible or the mesh will not stop trying to push through. I asked if a full removal was possible and it was advised to me that it could be possible but wouldn’t know until I was in surgery and they could look at it and see what was going on. I got bumped to the top of his list for surgeries, mainly because I was open and exposed in my vaginal wall.
In March of 2012, I had the revisional surgery, which included work on my rectal area for the second time, (original rectocele was done when I had the surgery to have the implant put in). I was in a lot of pain after and was off work for close to 6 weeks for recovery. The pain to pass stools was unreal and all this lead to getting prescriptions for Vicodin, Percocet, and I received morphine and other pain meds in the hospital. It was at this point that I started to have severe pelvic pain attacks which focused on the lower right abdominal area and shoots down my right leg. I noticed this pain every time I had a bowl movement. The pain is so insane that once again I would have to go to the hospital for help to deal with the severe pain, migraines, illnesses, etc. During the pain attacks, my blood pressure raised, my heart rate was always racing, I didn’t know what was wrong. I was scared every time because the doctors couldn’t figure out why I was having them.
I suffered pelvic pain attacks, increased bathroom trips, fatigue, low immune system, I was sick from everything all the time, from Migraines, extreme flu systems to Pelvic pain, I became really fatigued. At this point I was still full time employed and was trying to deal with all the side effects, being a mom, and also a very busy hectic schedule. I was also in the middle of major dental work when I had to quit working, so eventually all my teeth were gone and I ended up with an abscessed tooth and had emergency surgery to remove what was left of my teeth. I am still working on getting a new dentist so I can order my dentures. This is why I haven’t been able to do videos of me, I just don’t’ want anyone to see what I look like without teeth. My self esteem has taken quite a beating, so once I am confident enough, then I can start that.
During this time, I had no idea what to think about everything that was going on and I knew something wasn’t right, I was overwhelmed and didn’t trust anyone medically at all. I kept getting the run around from my gynocologist and my insurance company. I continued this schedule for the better part of 2012, 2013, and on and on, kept getting worse. I endured this for another year and a half roughly before I finally went to another Urogynocologist specialist at the Sacramento Kaiser center for women. After a full evaluation, I was advised I have Pelvic Fibromyalgia and they wanted to try Pelvic Botox to minimize the pelvic pain.
Shortly after, just a day or two after I had this treatment in August of 2013, my pelvic pain, rectal pain, and everything in between became so bad, at this point I had used all sick time, vacation, and fmla/medical leave and unfortunately had to end my employment with my company. Once that happened, I knew it was just going to get harder because, when I had to leave my company, I also lost my health insurance and was forced to go and get public assistance/and medical to help my family while I file for full disability. I never imagined I would be even dealing with this in my life.
The pelvic pain increased so bad it hits my left butt check and down that leg too, so now I am worse than I was before all this happened, unemployed, had no idea what to do for medical care.
I started to see county doctors to monitor my medication and help me with my medical issues that were going on, and I thought they would at least try and help me with quality of life, but I had never been so mistreated in my life. I had a 10 yr relationship with my original doctor before my employer dropped my insurance for Kaiser HMO and Emotionally, at this point I was really lost, in a dark place, afraid, crying everyday. My trust had been broken with everyone and everything, I have more medical issues now than ever.
Well, now once again dealing with a different county doctor every time I went. My anxiety and depression had become really bad, I didn’t trust anyone, I was determined to get better asap so I could go back to work, or so I thought. Unfortunately, the pelvic pain attacks continued and I was in and out of the hospital for pain control, doctors scratching their heads and after I complained and complained it seemed to do nothing. Basically I was labeled and treated like an prescription addict, and it has been so unbearable. My depression and anxiety and pain has led to me never going outside, I quit going to family events, and stopped talking to everyone, my family, my friends, everyone.
I was one of the earlier mesh patients, so doctors had a really hard time believing there was anything wrong with me. As time went on, I became really depressed, started to have extreme anxiety, and just stopped doing anything at all. My only link to the outside world is through here, the internet. I started to notice that over time, I was losing people in my life, slowly. It was so hard, because I just didn’t know how to deal with everything. Getting labeled by anyone, (doctors, family, etc.) is devastating, especially when I have a long history of responsible use of any medication prescribed to me.
After 1 1/2 years and multiple let downs by doctors and insurance issues, I called my insurance company and requested to file an appeal. I didn’t know what else to do and honestly I didn’t know what this meant either, but it led to me filing complaints about the doctors and how I have been treated, being assigned a case manager with the county insurance company. The doctor’s gynecologist assistant kept saying it’s the insurance denying any referrals, saying I am high risk? And to this day I still don’t know what that means , but all of a sudden my doctors were struggling to get my pain medication refilled every month and attempting to educate me on opioid use and how addictive it is.
Afterthought: About Prescriptions All though it didn’t occur to me then, but I was sitting in wonder, I kept catching myself asking “like how could I possibly be addicted to pain medication, prescribed by my doctors for a chronic pain condition that was created by a faulty medical device, pushed through by the FDA, then listed as dangerous, why weren’t my doctors at the county reading up on this and educating themselves on the dangers and what really is going on. Why I was having all the symptoms and why could no one could figure it out and along with the county doctors, No one knew what to do to help me, (still don’t) it just seemed like it was hurting me more, causing the trust to really go away. How though, and why was I being labeled an addict, when it was my previous doctor’s at Kaiser that started my prescriptions based on my previous doctors with blue cross/blue shield.
I am not an opioid abuser, I am a patient with a real painful, debilitating medical condition.
Transvaginal Mesh was still really new here in my county, even my insurance rep advised to me that she only had me and one other lady, with TVM complications. This was around the time, the crazy Opioid epidemic stuff started to hit the press. Now it’s supposedly the number 1 cause of death. Those of us who have been getting treated for 5 years or more, was branded an opioid abuser!
Ok so now, they say hind sight is 20/20, how was I to know that this method of treatment could kill me too. When I was with Kaiser I was able to call the same day, get a pain shot, medication, and go home all in the same day. I was getting treatment to try and deal with a brand new side effects from the faulty Mesh Implant causing me so much pain. I wanted to put this in because the Media, Press, they are not reporting the whole big picture. They are so focused on one part, they are not reporting the other parts. Where doctors started prescribing these for pain control at home, how in the world does that make me an addict of anything. I took my pills as prescribed and for a short time, I could do things like go for walks, grocery shopping, family time with little to no pain… but now that more stories of abuse of the medications have come out, we as chronic debilitating pain conditions suffer because we are not able to get pain medication anymore.
My equation for opioid use by prescription: Go to doctor with problem + doctor performs surgery with device approved by FDA at the time, (now is considered high risk) + aftercare misses the mark big time because I went through everything without an after care plan, any risks given to me to worry about, Nothing, and now I’m in more pain than ever, I was getting prescriptions to help with pain control at home and the only way to treat this so far is through Physical Therapy, Pelvic Floor, multiple trips to the emergency room with pelvic pain issues, multiple doctor appointments+ leads to more pain medication and rest at home, if you are lucky now + to you’re an addict to prescription meds we prescribed to you, but now all of a sudden and not able to get treatment to come down from them either, I was cut off cold turkey. This doesn’t even consider what this is all doing to our rationality either. Depression, Anxiety Attacks, Pain, it never stops now and now because of this, I am almost bed ridden with pain.
I was so stressed and frustrated and I knew I needed help. I still can’t wrap my head around how I was being treated, like a drug seeker or a drug addict, I just wanted the pain to stop. I have never had addiction problems to anything. I started to file complaints with the insurance regarding how I have been treated as a patient by doctors, how I wasn’t getting my medication and I was told by them to go to the ER. I started changing doctors, (didn’t realize who it looked from the outside) and it seemed like no one believed that I have a real condition.
I thought I was crazy and Now I am assuming I clearly have a mark somewhere on my name that says I am a opioid addict. I had to decide that I wasn’t going to let the doctors bully me any longer and because nothing was getting done, I was left to fight for my rights as a patient and I still am if you can believe it.
It took almost 2 years to get an appointment at UC Davis with a new urogynocologist, because now I am dealing with state or gov insurance called Medical health plan of San Joaquin. The first case manager from HPSJ assigned to me was amazing. She went above and beyond to try and get me help, however I had no idea that all that trouble to get to a specialist at UC Davis, only to find out nothing could be done, blamed Kaiser for not getting my medical records after several attempts and I never got a call indicating that it would be an issue. I got there thinking a plan would be set up, instead nothing. I completely understand that surgery is dangerous for us, however not even a lifestyle plan. Just wanted me to do physical therapy and report back. What doctors forget is it takes a lot to get transportation and I am almost an hour south of Sacramento, Ca.
Urogynocologist and a pain management doctor: After all this time, my regular gynecologist had one of his staff girls tell me that he left the area of women’s health for the county and was no longer handling complicated medical cases like mine and just does labor and delivery. At this point my heart sank once again, I can’t lie, I cried a lot, I believe it’s because he didn’t want to prescribe my Vicodin 10/325’s anymore and I was assigned by my healthcare provider to a gynecologist, he was a young doctor and really had no idea what to do for me either. Complained about having to write my prescription, and for a while I was able to get my medication but then the county hospital got in volved somehow and blocked my medication once again after lying to me about contacting the hospital head if I have any problems. Here I am in bed, no car, barely putting food on the table and trying to get medical care. (this was becoming all too familiar). My insurance HPSJ said that I could get my transportation covered for my doctor appointments. It’s interesting that I didn’t get offered this until I filed complaints with the insurance company and a rep called me regarding my healthcare.
My previous gynecologist doctor made it a point to put in my file that he educated me on opioid use and it’s dangers, which all he ever said to me is he didn’t feel comfortable continuing to prescribe medication to me this was after a year and a half, after I obtained medical, hpsj, because my pain couldn’t be pin pointed to a direct answer????
I did explain that the pelvic pain is so bad I can’t hardly get out of bed, my body is weak, I am fatigue all the time, even though I drink a lot water and barely eating. I can’t shake off why I am in so much pain, and fatigued, I have more pain now then when I started with the first attempt to stop the pain. The pelvic Botox treatment back fired and kicked started all the pain and it accelerated, and I didn’t have a choice but to try a pain management doctor to help, it was what the county was willing to do for me as a patient.
Well once again, my heart sank again. This Pain Management doctor made it clear, signs posted in his doctors office waiting area… In big print: I DON’T HANDLE OPIOID PRESCRIPTIONS, he even told me in my first consultation, if I am seeking opioid meds, he doesn’t deal with that, go back to my regular doctor. 4 back injection surgeries and a pelvic ablation, my pain remained and now the worst, and now my left butt cheek along with all my abdominal area and pain in the rectum, to the point now that my whole body hurts so much, I can barely do anything.
I stopped the pain management treatment because it wasn’t helping and I hurt every time I had injections in my back, even with fentanyl through an IV and I then I finally had enough when my pain medication was cut off by my regular doctor and I was being treated like a drug seeker, an opioid addict for Vicodin, which isn’t true and now a Guinea Pig for try outs. It’s the lesser of two evils that I have going on right now because when I had it, I could do some things like go places without too much pain or worry, however it’s Vicodin. Once I was off it, and one of the department heads came to visit me while I was @ one of my county doctors at the County Hospital, just before I switched doctors again and she said to me that I couldn’t get pain meds from there because the president (OBAMA) doesn’t want anyone on opioids anymore???
I was thrown off, (of course), because I couldn’t believe what I was hearing. Although my constipation has lightened up, my rectal area is so sore all the time (on the inside) and the pain every time I pass a stool, is unbearable, with multiple side effects going on and now in major amounts of pain, I am home, in my bed and I never leave my house. I used to be involved with everything, not anymore.
This part is very disheartening because I actually started to self medicate at home with cannabis Marijuana and alcohol, only for a month or two, however cannabis use was very good, just like in the olden days, Alcohol numbed it immediately, but we all know about the down fall with alcohol and prescription meds. It was a very dark time, for close to 6 months, and when I realized I was in a bigger fog and really couldn’t remember half of what I was doing,
I stopped drinking hard alcohol and started to pull myself out of my depressive state. My husband has heard me crying while I am in the bathroom passing stools, always asking if I am ok. It’s scary because no matter what, I am slowly debilitating and it’s so hard to do anything without pain interfering, this is not normal pain humans should or can live with, but horrible pain where I can’t function. I am now currently having problems with memory, putting thoughts together, it all takes time and I have painful muscle spasms. I am always at the doctor trying to figure out what to do.
My last resort was to find a new Internal Medicine Doctor (private) and Gynecologist (private too) that accepted Medical HPSJ. Instead of dealing with the county, I should have done this from the start. I actually searched for doctors that have a reputable experience in dealing with complicated medical cases like mine. I wanted a fresh set of eyes to look over my medical case to help me prepare to live with this inside me, knowing the possibility for a full mesh removal is no longer on the table.
I have never, in all the years I paid for private insurance, have been treated the way I have. The main factor, My age, I am still considered young for the long term disability, however my age shouldn’t matter, I have been injured and suffer major side effect from a Transvaginal Mesh Implant which is now listed as Dangerous and Causes severe pain for patients, so I said goodbye to county and everything to do with it, including the county hospital that refused care for my debilitating chronic pain condition, as a result of Transvaginal Mesh, a dangerous medical device.
My new direction in life…
I wrote to my new doctor a 6 page letter explaining everything I have been through and how I am not a drug seeker or addict, I just want to find a way to manage my pain and the possibility have some quality of life. `This mesh has cost pretty much everything I loved and worked so hard to do as a single mom, it’s been stolen from me, any opportunity for a full life. My career is gone, my rental home I had, gone, my car, gone (repossessed) after making payments for over 3 years, I had worked hard to buy it and finance it myself, and the worst part, I had to move my family from where we were in a nice suburb area in a great town, good schools to a poverty stricken area in one of the worst cities, where crime is high in Stockton and now living on state assistance until my disability case is determined. I should know anytime now, I waited almost two years for my court date, I was denied the first time and immediately found a disability attorney who represented me and helped with my appeal for my permanent disability case. I have high anxiety days, waiting in wonder, praying to please let them authorize it.
The future of the unknown:
I had a change in Nurse Case Managers at HPSJ (I did not request this) with my health insurance. It took a total of 6 months to finally get to see my new Internal Medicine doctor and now it can take up to two to 3 months to see him regularly, but it’s worth it if he can help me with long term care. I did get to see my new gynecologist too, who said she wanted to wait to see what my doctor would do, so that’s still being debated out. I have been trying to work with everyone so a plan can be in place and then maybe I can stop stressing out little bit. I have had a lot of underlining conditions to deal with as well, like severe constipation, stomach aches, chills, hot, and diarrhea, migraines, continued constant pain in left butt cheek and low back, abdominal pain and pain all the way up my spine to all over my body, most days I am in bed due to pain. I also am in the process of my diet completely changing to gluten free, lactose free and organic. This is an expensive change so I am still trying to work that out.
My quality of life will never be the same, my life is different now. I have developed social anxiety disorder, (can’t handle big crowds of people), my fibromyalgia diag 2007 before the mesh surgery is worse now (auto immune disorder). My body pretty much rejects any food that, mostly I have been sticking to low carb, meals, and have cut out so much.
I did have some changes in medications, because of the pressure doctors are under regarding the war on opioids, I do get a muscle relaxer (very mild dose), along with nerve medication, however there still hasn’t been any success in handling the pain. I wake up in pain and go to sleep in pain and I have no normal sleep schedule. My pelvic area hurts just getting in and out of vehicles or trying to walk. I can’t walk more than a block if I am lucky without feeling pain and the anxiety and stress is overwhelming.
I keep telling myself, just hang on a little longer, everything will be ok. This alone took over a year to deal with, emotionally, I am still having issues. When we moved to Stockton, (housing costs are ridiculous for low income, there isn’t any), I became separated from two of my kids, my oldest and middle son, who stayed behind in Manteca, with their biological father. This now the 2nd time I have had to move away from my son’s. It broke my heart, I worked so hard to have the good life, believed that if I work hard, the benefits would come. Universal Karma.. It’s a double standard I don’t believe anymore. Bad things can happen to good people, no one is exempt. Where did it all go wrong?? It’s too much to think about. Mental Illness is a real thing, and should be talked about more amongst middle class families.
I can say that my new doctor has done more in the last 6 months than when I was dealing with the county doctors and staff for close to 3 years. I have also been through 12 sessions of Pelvic Floor Physical Therapy, I am trying to get that extended, I have an amazing Physical Therapist and I have been seeing a therapist to help me with my emotional state of mind for close to about a year and half now. I know there isn’t much that can be done, other than come up with a life plan to just try to have some quality of life. I am still holding onto hope, but having hard time on how to feel anymore.
Family and Relationships
Having support from your family and friends is supposed to help drive you to live a good life everyday and to be there to help support you. What’s really disappointing is not having that anymore and believe it or not, many family members don’t believe you or make you feel like you’re a liar, or fibbing, or exaggerating your medical condition and where did that leave me, feeling alone. What do I say to that?
This part is especially hard to talk about because what I thought would happen with my life, it completely backfired in my face and I thought I had dealt with everything, however I was so caught up with side effects that life just keep passing me by. I was devestated and on a lot of levels I still am and trying to cope everyday. Emotionally I am struggling living with limits that I never had before, I was used to just getting things handled. When this all started I had a successful career that I worked hard to achieve, I was promoted just before the side effects really started up and then shortly after they started, I was demoted just like that and put on the lowest paid commission schedule in the company, and always in pain, stress, and unethical decisions I was pressed with at work, I went off work on disability, which eventually forced me leave my job after 8 1/2 years, because of my FMLA/Medical Leave time in CA had run out and once I finally made it to the place were I wanted to be in my company, I watched everything I worked for slowly slip away. Although I am hirable, there is no way I can work anymore. I didn’t know what I would do about my life, taking care of my family and. where it was heading.
It was about 5 or 6 months later, fate stepped in and I met my husband, Nick. After dating for a while, he moved up to Manteca from the bay area and we married the next year with all 5 of our kids. He has two kids from previous relationships and I have 3 kids. We were married at the Excalibur hotel in Las Vegas, and it was beautiful, it was one of the best days of my life, I truly believe I have met my best friend and partner for life. It really has not been a easy journey, he stands by me 100 % with what we are dealing with every day. My husband has a Pit-bull, I have a Pomeranian, and my Siamese cat, they are best friends and I have never seen 3 animals get along the way ours do.
He gave a full blessing to the starting of my blog and with how much it takes to run with social media as fast paced as it is. These daily challenges have really affected our family dramatically, moving to Stockton from Manteca, CA was hard and not having the income I once did really hurt. My husband stepped in and takes care of me full time and not being able to make it through dishes, laundry, etc. and I can’t exercise excessively without doctor approval. I was the primary income for my family, and now I can barely make it out of bed most days. Mostly all my posts online are straight from my bed. It hasn’t been easy on our family, we take things one day at a time just take the days as they come.
At this point, I know nothing can be done to undo the physical harm and mental challenges I deal with daily, so I had been thinking about everyone else this has been affecting for a long time now and started a support page for Transvaginal Mesh Patients called West Coast Mesh Fighter, for any mesh patients, family, and friends are welcome to visit and follow because this doesn’t just affect me, it affects everyone in my life I am close to. This has led to my blog getting created, and now I am on several social media sites and I continue to grow more followers everyday and because I have noticed no one is really talking about mesh implants and the daily struggles, how bad the debilitating and chronic pain is, The medical side effects and how it’s affecting our daily lives, treatments, emotional help, relationships, friends, and I know we need better health programs for us patients that have been injured by a medical device and we are not getting proper care that possibly that can help us regain a better quality of life both physically and emotionally because we are on public insurance and doctors and medical facilities won’t treat us.
What gets me is I have been working since I have 15 1/2 years old and they just toss you to welfare, where you get treated so differently, horrible. I was advised by my company, in my exit packet from the company, no one called me about this, that I had paid into long term disability, my employer didn’t have a care either, I had to fight for that benefit, then because of the county doctors not getting my paperwork done on time, the long term disability benefit insurance Prudential dropped my benefit giving 3 or 6 months to appeal or less, which I didn’t find out until 2 years later, because you don’t know how to deal with these things until you actually are forced to go through it. This is how we are penalized as patients. I should have had this benefit for life, but because of paperwork issues, no more.
All this stuff, people don’t know about and it’s a very cold process setting u up to fail especially when you are dealing with this alone. The amount of money we get to take care of our family is sad, I am searching everyday for public programs and any help so I and so many other patients like me, aren’t feeling so alone anymore, not feeling like a failure and can find help when they need it.
I will advocate every day if that is what it takes to get the help and to help others too. Patients going through this probably aren’t talking about it to anyone because, not only is it a sensitive thing to talk about, no one is listening, making us to feel like there is little to no medical care or hope for us, not trying to help us, and it’s leading to us finally giving up because doctors are scratching their heads wondering how to help us and the loop holes never stop.
People forget, I think, and I am not trying to say this mean, but this is a very emotional and physically draining condition and It’s like having cancer and it never goes away, it’s there forever interfering with normal daily life. I don’t even know what normal is anymore. I am one of the patients that cannot get a full removal because the 2 specialists (urogynocologists) have said it’s too dangerous, so I am trying to live for my family, not having enough resources is crippling us. I cry most of the time, I try and hide it, but my husband and my kids always see’s right through me.
I developed allergies to medications through this process (infections), so I have to carry an Epi pen just in case of a allergic reaction and I take a lot of medication daily to deal with the side effects. I have been opioid free for about a year now, but I am not able to do nearly as much as I could while I had them, so I don’t know what is worse honestly, having medication that can kill me, or having parts of a plastic (mesh) that could still kill me. Yes I said it! How do wrap your brain around this one? Getting as much emotional and physical support as possible from family and friends. There are so many patients going through this and worse, the feeling of being alone, spirals you into a dark place emotionally and I am sure that although I can’t remember everything, my depression has played a large part of how things have gone. The fog like state can go on for hours, If I do something like laundry or dishes, I am so tired I’m in bed for days at a time, barely getting up.
In an effort to trying to help myself get better, it started with my goals, that have changed and now my diet changes, attempt to do PT at home, and emotionally try to rise above the daily challenges of pain and suffering while living with TVM.
Then and Now
We can all go back and wish we never had the surgery. I know I do all the time, so do my kids, although we were misled by doctors, shoveled around like we don’t matter, dwelling on it doesn’t help the mind, and now helping others is my way of coping, dealing, etc. with my experience and information that I have learned that has been helpful, gives me some comfort knowing that information I share may save a life. With all the suicides, deaths, severe complications from mesh , along with hundreds of thousands of people suffering because of this, all I can think to do is to share my story and offer any help I can.
Now I am working towards new goals, running a transvaginal mesh support page, Facebook, Instagram, and Twitter @WCmeshfighter. My blog is http://www.westcoastmeshfighter.wordpress.com. I just started to do pop up Vlogs on various healthy living styles and hearing from other mesh patients from around the world, I am starting to feel the love again. This mesh implant that was supposed to rejuvenate me, improve my quality of life, instead it almost destroyed me, and I won’t let it anymore.
We are stronger together, helping each other and finding some purpose to a life is what is needed now.
I have been on what I like to call (the Mesh Train) for too long and it’s time to get off and learn to live again, the best way I know how, by helping others.
Thank you for letting me share my story, any questions you have, please let me know, I will try to answer them for you. Blessings to you all.
Co Founder of westcoastmeshfighter