Hello and welcome to Part 3 of my journey through the downfall of my previous life and coming into my new one. (Of course this didn’t make anything any easier). I didn’t understand what was happening in a full scope. I will say this right away, Mental Health is real and serious If you don’t get treatment, it can mean a complete downfall of your own life, to decision making collapse, and financial and emotional depression.
I was forced to make a decision that I swore I would never have to make and that was getting on the welfare system until my Social Security Disability goes through. At this point in August of 2014 when I started to lose everything, I was really depressed, so I will recap and if you haven’t read part 1 & 2, please go back and read those blog posts to better help you understand where I am at now.
I can give you a brief recap… in 2009 I had a TVM, Transvaginal Mesh Implant to correct pelvic organ prolapse, 2010 complications started, by 2013 I had depleted all my vacation, sick, and FMLA/Medical leave with my employer which led to losing my job due to medical reasons and I was listed as hirable, (which meant nothing). I know from another collector, that if you ever worked under any of the current division managers, that they will deny your rehire due to that??? APPAULED and disgusted by the way I was treated, I knew they would never rehire me even if I got released to go back to work. Just another hit to what I was facing. It made me feel ashamed, low, and really sad, which increased my mental disability and anxiety.
Getting Medi-Cal, SNAP, and Cash Aid was a hard pill to swallow as I never thought I would have to be drawing from there as a financial resource. I immediately started to see a Gynecologist in the San Joaquin County Clinics and Tried with one of their regular doctors for my main medical issues. It felt like a treat them and street them kind of attitude. The personal medical attention I was used to receiving quickly went away and even worse I became more of just a number.
I can say the only thing they could address for sure is that I was Depressed and had extreme Anxiety, it was like they were ignoring the fact that I had a Transvaginal Mesh Implant and all these complications are directly because of it. I really don’t think they knew what to do to be honest. My then Gynecologist was keeping my pain at bay with monthly scripts of Vicodin 10/325’s. I was having extreme pelvic pain and I was getting migraines, no sleep, was continuing to go to the hospital with extreme pain, to get basic testing, medicine and sent home. My husband and I were left scratching our heads, now what do we do.
I want to say about 1 1/2 years of this went on and the receptionist/medical assistant/bookkeeper/ and on and on, stretched thin on resources. They submitted my case to San Francisco and UC Davis, various pain management doctors and according to the medical rep at the time, it kept coming back high risk????? To this day I still don’t know what that means, but it could mean they were labeling me an OPIOD ADDICT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Illegal activities – selling, forging, buying from nonmedical sources. Injection or snorting medication. Multiple episodes of lost or stolen scripts. Resistance to change therapy despite adverse effects. Refusal to comply with random drug screens. Concurrent abuse of alcohol or illicit drugs. Use of multiple physicians and pharmacies. What are the behaviors that are suggestive of a substance use disorder? Serious behaviors that are considered red flags include the following: Deterioration in functioning at work or socially. Illegal activities—selling, forging, buying from nonmedical sources. Using the medication in an inappropriate way like injecting it or snorting it. Multiple episodes of lost or stolen scripts. Resistance to change in therapy despite adverse effects (that is, the person is overly sedated, yet he or she wants more. medication) Refusal to comply with monitoring like random drug screens. Concurrent abuse of alcohol or illicit drugs. Use of multiple physicians and pharmacies (not discussed openly as in the yellow flag scenario, but you find out about it some other way) Daniel Alford, MD, MPH.
I completely support that medications like Vicoden, can be addicting, and can lead to addiction abuse. That isn’t me, I am happy I haven’t had it in over a year, however the downfall is I can no longer walk to the store, or even around the block, let alone doing regular house hold chores without help. Some days’ I cannot even get out of bed and when I had the Vicodin I could at least do some basic things, so it really is a double edge sword to be on.
Of course I didn’t know this then, I was still believing that my medical team had my best care and interest at heart, but no, they didn’t. It was when I started to question my medical care that all of a sudden, my doctor left that area and no longer was handling cases like mine (WHAT). The new gynecologist was young and had no experience in the area I was having problems with. I didn’t get any notice, I didn’t get a call, it was when I called them to find out the status of things that I found this out.
DEPRESSION/Anxiety doesn’t begin to describe my state of mind. It was suggested by the medical rep there, that I switch insurance companies from Health net Medi-Cal to Health
Plan of San Joaquin Medi-Cal and continue to try to get to see a Urogynocologist. Finally UC Davis approved my case and off I went to see yet another Doctor, however it was a Urogynocologist, so I was hopeful. I went down there twice… from here to Sacramento, to find out that records were not being sent there, no one was following up on my care, and I was then turned away, waste of gas??? Because of the seriousness of the surgery to remove all the rest of the mesh was considered too dangerous, he said nothing could be done and until records are sent and received, there was nothing he can do. (Another Let Down) and more work for me as the Patient.
My new gynecologist (very young) at first acted like he was going to try and help me with Pain Management, still nothing. As I continued to go to the County Hospital it was becoming an ongoing issue for my care and I filed a complaint with my insurance company, I think this was the 4th or 5th complaint I filed and of course it did nothing to help me, but these are their rules and I was trying to go through the complicated process to try to protect my rights as a patient. One of the hospital heads at County, along with a Nurse Case manager started to look at my case and even they acted like, yes I needed help and they wanted to try??
I also called my insurance around January of 2016 and requested services for Mental Health because I really thought, ok now what do I do?
It was looking more and more like I was a drug seeker to them, because my side effects were not familiar to them and I was no longer a patient with complicated Mesh Implant side effects. I believe I have been labeled at this point and all this didn’t come to a head until I went to a routine doctor appointment with one of their doctors, that all shit hit the fan.
They wanted me to believe that my pain wasn’t real, that there is no indicator as to why I am having chronic pelvic pain. At this point, it was around June of 2016, I wasn’t getting any more help for my pain and I felt frustrated, let down, and almost out of resources, and if it weren’t for my journey dealing with my mental frame of mind, I might have very well just given up.
This is the very sensitive part of the journey for me to write about. It’s because I really felt like I had lost everyone and I knew I would be alone in this fight. Another big pill to swallow considering I was a very happy, motivated, wife and mother and now my own family didn’t believe I had a real condition/conditions to deal with. With doubt lingering everywhere, I was so depressed I knew I really needed help and I was afraid of losing the person I was before my mesh nightmare began.
Well, I had a complete nervous breakdown and I demanded to see the person (head) there that my insurance company had told me was supposed to be helping me as a rep for the hospital. She came down to the office and with the nurse and her in the room, it was indicated to me that the reason I cannot get my pain medication is because I started injection therapy (surgery). They had been prescribing me every month without an issue until this. I agreed at that point but I had already had 3 injection procedures and had another one coming up, so I agreed that if this next one didn’t work, I wanted to go back to my previous medical plan, until a new one could be established. I left knowing that this was their way to stop my pain medication because of the new opioid crisis that had just made social media and news headlines.
Here comes the final letdown… my nurse case manager changed at HPSJ and this young gal was obviously brought on to get my case closed???? More corruption and being misled that their goal was to help me. I can’t say that I am really that surprised because no one wanted to admit that my Mesh Implant was the primary reason everything was happening to me.
I had a failed pelvic Botox treatment in august of 2013, this is what really crippled me. I don’t know what happened other than what my body tells me and it was telling me something wasn’t right, why is it so painful to go bowel movement and I still had extreme pelvic pain and now pain in my left bottom cheek. Every time I had to go to the restroom the pain was debilitating and now the burning pain never stops, and I have to put myself on liquid diets just to pass a stools. Leaving me dealing with a full blown auto immune disorder, pain, and more depression. There isn’t a day I don’t wake up in enormous pain because I over slept my medication times and it’s because I couldn’t sleep. Why?? Pain, always Pain. I can be up for at least 2 days without sleep until I finally pass out from exhaustion.
Where am I Today:
Being completely dissatisfied that my health concerns are getting addressed, I fired everyone. Yes, I did and I still have concerns regarding issues that have not been addressed yet. I really felt like I was having an out of body experience dealing with all of this and even though I don’t know if what I am doing is right, I trust myself more than I trust in general, so what else really do I have to lose.
It took me almost 6 months to locate and get accepted by a new doctor. I insisted with my insurance company a Internal Medicine Doctor, a new gynecologist, and Nurse case manager with HPSJ. It took 6 months, for that and I have seen my primary doctor 3 times. At least once every 3 months and my new gynecologist once. I have been referred to a new pain management specialist which I see this month and I have only spoken with my new nurse case manager for HPSJ once due to schedules and that he is part time. I have been really busy trying to get other lose ends tied up.
Right now I can only trust in Hope and Faith, prayers, that I can continue into a positive quality of life. One day at a time and rebuilding trust with a very broken system at best. I have my life and my family as a motivator. Some of my family is coming around and it’s really such a positive direction that it has me just continuing to fight back, believe in my truth.
Earlier this year, while doing research, I discovered that there wasn’t much discussion in regards to the after care that comes with living with a mesh still implanted inside you, or part of one (like in my case, revisional surgery was march of 2012. My urogynocologist with Kaiser said he couldn’t get it all, too dangerous and would do more damage than good to remove it). So my husband and I started westcoastmeshfighter here on WordPress and I am now on twitter, Instagram, Facebook, which is where I started, Pinterest, and YouTube. I am in the Google search for transvaginal mesh and my hope is to help others who may be suffering the same things I am and also the road blocks that I have dealt with.
For the longest time I felt like because the Transvaginal Mesh Implant caused all these different loses the only way to rise above this, and to keep telling the truth, my pain is real, my story is real, and what I am facing daily is real. The more patients that read my blogs, and follow me on social media will find out first hand just how complicated our California health system is, I am still receiving services for some of my conditions, however I know my daily battle isn’t over, it will never be completely over.
The graph above shows how many days it can be before a decision is met for social security disability, so stressed but what else can I do.
I have filed for social security disability,(I haven’t heard a decision yet, it can take up to a year) this is after filing, denied, appeal, denied, and a court hearing, I have been deemed disabled both physically and mentally because of a direct domino affect from a Transvaginal Mesh Implant by my doctors, it could at least 6 more months. It did take my career away, but I won’t let it take my personally life too. I will keep fighting until I cannot fight anymore. My benefit from work was canceled because the county doctors couldn’t get their paperwork to them in time and there was only 6 month period for a review. During that time, I was dealing with extreme depression and wasn’t dealing with anything well. That is what led to me having to file for welfare. My benefit was $1100 a month and it’s gone now. so that insurance company gets out of what they promised and what I paid into for 8 years.
One last thing, which is really hard to talk about, but it needs to be said, not only said but tracked, suicides because of the complications, pain and suffering due to having a Mesh Implant go faulty on them and they couldn’t get treatment. I fight for them too, we shouldn’t be denied healthcare over a device that was approved through a loophole in the FDA called the 510K process. We shouldn’t be pushed around, doctor to doctor, because this device is too complicated to deal with and also because the patient is now dealing with multiple conditions and they want to deal with it. My question to all of them would be, why, why did you become a doctor then. I understand not all things go right, but the numbers on this are too big to deny it exists. It’s not too late to help people, they are in the hundred thousand now. The only thing I will say in regards to the lawsuits are that lack of accountability by them. It makes me really sick to my stomach and I feel really awful for all our patients and loved ones that have passed away from this.
There are patients just like me world wide now and so many support groups it’s overwhelming, and amazing, but we still are not getting heard because some implants are still on the market. I will continue to fight for patient rights and with hope, this won’t happen to anyone else.
- Jane Akre, Medical Mesh News desk
Also there are several groups on Facebook, Twitter, Instagram, and here on WordPress. that support mesh patients in other countries such as Canada, UK, Australia and here in the United States. I hope more develop because there are 75% more patients with complications than there was when I first started here the damaging, life altering results from having and living with a Transvaginal Mesh, etc. I truly believe by standing together, we can create a large voice that side effects and debilitating pain is associated with a Mesh Implant and more needs to be done about it and that patients suffering side effects should get unlimited access to medical care.
Thank you all for reading, I know it was long and tedious and I am sure I left somethings out due to memory loss that I am experiencing now, Nerve and Muscle damage, God bless you all Mesh Warriors, Survivors and God bless the Mesh Angels, I will not stop fighting for patient rights. Thank you all and until next time… stay strong, positive, and we are so large now, we have each other, in our world, it’s extraordinary, Thank you all so much, I am a better person because I know you all support each other and myself. I am truly blessed because I have my family and closest friends Most importantly, My closest family. It really keeps me going strong and not stopping.
Thank you, thank you so much
M. Hedgcoth, Cofounder of Westcoastmeshfighter, advocate and humanitarian for patients and loved ones of those affected by a Mesh Implant.
footnotes… I lost all my teeth, my health and immune system has declined and I am really afraid, because according to my revisional surgery urogynocologist, he couldn’t get it all, so why can’t they just give me a 3d ultra sound, blood work I’ve requested, find the rest of it and give me rightful care for this???? It beats the hell out of me….. I now have to wear dentures for the rest of my life.