Tuesday, December 17, 2013

So much more than just a iud gone wrong...

I have been debating for quite some time now on updating this blog mostly due to some negative responses I have been given. I chose to update and also address those few people who tell me to "move on"....and "it was only a medical device that went wrong".

But first just a quick update...The weekend before thanksgiving I had been hospitalized for lower abdominal/pelvic pain & bleeding from my bottom without a seen cause. I went to an urgent care when one of my doctor appointments was cancelled, ended up getting sent over to the hospital ER and then admitted and talked of a transfer to the university hospital. I remember very little of that stay but from what my husband told me I was in a considerable amount of pain & my husband had a very difficult time watching me in that pain. I eventually could tolerate the pain as a few days gone by and was sent home the Tuesday before thanksgiving.

Ask me what I think - I think the mirena iud has something to do with it - however that might be. I asked the surgeon from the hospital visit to refer me to the university hospital for outpatient care to look further into it. 1st available appointment isn't until March.

Another thing is I have been going to therapy and the 1 thing that has me crying each and every session...is the mirena and how my life was and still is affected. It took so much from me, and still to this day haunts me. I cannot read my blogs or watch my youtube video without crying. I have a lot of healing not only physically, but emotionally and mentally as well. For me this is so much more than an iud gone wrong...

I have shared my story so people get a raw 1st hand experience at what is possible from the mirena. I've gotten many uplifting responds as well as many other responses including some negative ones as well. My only response to those who aren't as respectful is, I share what has happened to me. It is raw, it is very explicit in content, if the reader chooses to stop reading because of the content, I respect that. This is meant for women who want to make an educational decision on birth control methods and use my story as a failed iud story in that decision. Every women needs to make their own decisions for themselves. I respect every woman's decision and hope to have some respect sharing such a personal experience, as this is not by any means easy to share such personal and actually quite embarrassing information.

To those who have sent me negative responses, my response...I am grieving. Not only the loss of my pregnancies, but my uterus (my hysterectomy), my health and my emotional wellbeing. No one would think to tell someone who lost a child, husband, parents (and so on) get over it and move on. So why is this any different? No one has the right to tell me to move on already, not even the makers of the Mirena (Bayer). Every person grieves differently and at different lengths of time. This whole ordeal has left me with a scar. The hurt and pain will (hopefully) get less and less as time goes on, but for now, it is an emotional battle I deal with everyday. I will never forget what I have all been through. I'm lucky enough to be alive & strong enough to stand up for myself and my story.

"Everyone you meet is fighting a battle you know nothing about. Be kind. Always." - unknown author

Monday, October 28, 2013

My Mirena IUD story & how it changed my life forever - YOUTUBE VIDEO

*please overlook spelling errors in my video. I do know they are there. I made this video the day of the anniversary of the miscarriage and was it took all I had just to get it done. Someday I will re-vamp it with errors fixed. Thank you :)

Saturday, August 3, 2013

Life after hysterectomy

It's almost 4 weeks post hysterectomy. On 7/8/13 my life changed forever. I went into the hospital thinking it was going to be a little sad getting my uterus and cervix out, but overall an easy Outpatient surgery. From what I was told from my husband and Dr. Mehta, who is the DiVince robotic assisted surgon, is that the surgery itself went great. Dr. went to tell my husband I was out of surgery and while doing that the anesthesiologist was waking me up and my body went into seizure-like shock. Dr got word and before my husband could sit back down the Dr called him back and let him know what had happened. I had 4 more of these seizure-like spells and I was taken to ICU to be monitored.  My husband was informed I was in ICU and then joined me. I remember nothing of my time spent in the ICU. My husband said I had a EEG and an MRI where it was determined I did not have seizures, but rather this is how my body was dealing with pain, it literary went into shock. I continued to have seizure-like spells and I do know right before I had these spells I would feel an intense pain in my head and next thing I know I wake with a dull pain and a sense of time things not being right.

Dr. Mehta said it was good I had my uterus out because not only with my mirena issues I also had adenomyosis and endometriosis, of my uterus. Adenomyosis usually happens later in lifer after having a C-SECTION (a type of scar tissue-like abnormality in people who have had a c-section or a punctured uterus) No c-section for me, I had all my boys vaginally, the only thing that punctured my uterus was the MIRENA. So, yet another problem the mirena had given me. Also I should mention, I had neither of these conditions in my uterus prior to having the mirena.

It makes me sick to think that the mirena is still the recommended choice by Dr's for long term birth control. I am only 1 of the 1,000's of stories out there.

Monday, June 17, 2013

Update 6/17/2013 - Hysterectomy needed

I am scheduled for a hysterectomy on 7/8/13. My bleeding has gotten really bad to the point of large clots and easily soaking through everything within an hour or less during the bad times. I will get a "period" every couple of weeks, and have cramps that can double me over. I am taking ibuprofen without relief. I went in for an ultrasound a couple weeks ago and had yet another scare. The Dr asked for urine for a pregnancy test because a "sac" was in my uterus. My husband had a vasectomy and got his results of no sperm found just a few weeks before, so I knew pregnancy was next to impossible. Well I had a huge blood clot in my uterus. Dr said it's time to do something. At first I choose an ablation, but then after talking with my husband and realizing that it is possible it wouldn't work and it was just buying time for a hysterectomy, I then called the Dr to switch to a hysterectomy. Based on what the mirena did to my uterus and such I was ensured I made a good decision.

I am really scared to go through it. My dad's mom died from an infection from her hysterectomy before I was even born. I know times and medicine have come along way since then, it still rests in the back of my head. I do not want to make my husband a single dad with 4 young boys, and I don't want my boys to be raised without their mom. I also have the sentimental part of it; My 4 boys all started out there, & of course it's what makes me a woman. I'm scared of my bladder problems getting worse because I read about people needing a bladder sling after it because of leaking. I already have interstitial cystitis, so I don't want to make matters worse. I worry about the intimacy with my husband as I hear that can sometimes become an issue.

It's not what I want at this point in time, but I need it, I cannot live like I am anymore. I am limited on what I do and where I go. I have the migraines that come with every period or bleeding I get. And I'm 32. No 32 y/o should have to loose their uterus. Ever.

I hate you mirena, I believe with every heartbeat I have, that the mirena caused this, whether scientifically it is proven or not....woman's intuition - the Mirena caused all my heartache, all my pain and now it's going to cause me to loose my uterus. Something no-one can give me back. It's taking my womanhood, my childbearing organ and what my 4 boys started out as a growing life. I will never be the same after 7/8/2013.

Friday, February 1, 2013

I saw the GI dr today

I saw the GI dr today and will have a colonoscopy done on Wednesday (rescheduled because kids had norovirus) to check for further damage from the iud. I proceded to tell him my story and it seems like I shocked him...A LOT. You could tell he was processing the information as he listened to me and looked at the operative reports and pictures from the iud removal. He face was confused, shock and just dumbfounded by everything. He said our best bet right now is the colonoscopy and then if anything needs addressed then he will refer me to a surgeon. I hope it doesn't come to that. I just want this chapter closed. I will update the blog after the colonoscopy.

Colonoscopy is scheduled for Tuesday 2/12

Thursday, January 24, 2013

Now I have to see a specialist

I made the phone  call to see where I needed to be seen. I have been having uncomfortable to even painful bowel movements and seeing the dreaded red when I wipe (obviously blood...and yes I know 100% where it is coming from...as the nurse asked me) She said because the mirena migrated to the large intestine/rectum I need to go to a GI Dr. So next Friday I will go there.

Also in the last couple weeks after doing in depth research I made the connection that mirena has the same hormone as the "morning after pill" or emergency contraception which is levonorgestrel ...so essentially my pregnancy didn't have but a slim chance of survival (approximately 1/8ish chance) This made me angry.

Sunday, January 6, 2013

My Mirena Nightmare

I gave birth to my 4th boy on March 27, 2012 and during my pregnancy I planned on getting my tubes tied....signed all paperwork and that was that. Then comes delivery and the delivering Dr, told me that because of my age (31 at the time) that I had a higher chance of the tubes fusing back together to make me fertile again....I made a fast decision and thought I would take a bit longer to re-think our options. I then had some unrelated problems with hemiplegic migraines that I was also seeing my OB with in which I briefly inquired about other forms of long term birth control, of which the mirena was on that list. Then once I recovered from those migraines I decided it was time to get serious & think about birth control since my husband and I felt our family was complete. I debated between Essure, Mirena IUD, copper IUD and getting tubes tied. My dr who delivered me is who I talked with and he talked up the Mirena...and then I made the decision to go with the Mirena. The office had an opening with a P.A. (Drs had a 2+ month waiting list) so I took 1st available (mid July). I was on the last day of my period when I had it done. It was an ultrasound assisted procedure with the u/s tech, the P.A. and a nurse. During insertion it was a little uncomfortable but overall not painful. The PA put it in, tested it with a very light tug while the ultra sound was still going on, made sure everything looked ok, then trimmed the strings. I then left the office and other then a few cramps I felt ok.
Fast forward to 4 weeks (my re-check day) either I wasn't feeling well or one of my kids wasn't feeling well (my kids and I had a stomach bug, They got it first then I did)so I had to cancel the appointment (this is the only reason I cancel appointments, otherwise I always make my appointments). I figured I would feel for the strings, so I did and I felt them fine and still at that time had nothing to give me a reason to question the mirena (no pain or anything at that time). I knew my annual check was around October so I figured unless I had problems I would wait until then, little did I know that lingering stomach bug was most likely something else.
 I was having a lot of loose stools and cramping (sorry for this info but it is important in the story)since that episode of the stomach bug that I thought I had. I got my period in the 1st week of August, and throughout the month of August and September I was cramping on/off, but chalked up the pains and cramping as well as loose stools to that stomach bug that lingered on (I have had stomach bugs in the past last a few weeks at a time). On Sept. 13 I just wasn't feeling right and thought that stomach bug was going on too long and just being pregnant not so long ago, felt like I had early pregnancy symptoms. I picked up a dollar store pregnancy test while I was shopping and figured that would give me peace of mind....It came back + but really light. I  panicked and ran and got a box of each brand pregnancy test that I could find in town. I took 3 that day, all +, I called my OB right away. They wanted me into get a blood test immediately. As I told my husband I was in tears because this wasn't suppose to happen, I thought!
I then went back several more times 3 or so days apart for a hcg beta test until #s were high enough to show where the pregnancy was (if I had a tubal pregnancy or uterine pregnancy) When #s reached over 1000 I went for an ultrasound (on a Monday). The u/s tech found a sac (after several minutes of trying to relax), then I said jokingly...don't find another or I will pass out. She then looked around a bit more and called another u/s tech in and said something about hyper-ovulation and then saw another odd shaped sac. I asked if that was a second sac and was told yes. Then I started crying and trying to get a grasp on everything. I then went and saw the dr and was told that obviously the mirena wasn't found where it was suppose to be and that there were 2 sacs, but the other one was either several days behind the normal sac, or it was being absorbed by my body and I was miscarrying. I was then given the option to keep the pregnancy going or to abort the pregnancy due to the fact the mirena was still unaccounted for which I was told had a 50/50 chance of survival if the mirena was still somewhere in my body (as the mirena has a hormone that birth control pills and the morning after pill has, with the intention of ending a pregnancy). There was no questioning it...I was keeping that pregnancy going.  I was told that after the pregnancy is done then they would explore (x-rays) for the missing iud. I was told I was approximately 5 weeks along and a week from then I was suppose to have another u/s for viability.
That week between those u/s felt like it took forever, we went from being shocked & scared I was pregnant, to eventually thinking this pregnancy was meant to be and getting excited. Then the next Monday I was back for another u/s. Up on the screen popped up the one sac immediately and I felt so incredibly happy. Then we saw the baby with a beating heart and I immediately loved that baby! (I was told a very healthy baby's heartbeat) But then the other sac was no-where to be found and I was sad for loosing that baby. We then saw the dr where he said the same...a healthy baby!
Then I went home...and was spotting. I was told it was possible to spot or lightly bleed from both the sac that didn't make it and from the internal u/s. Then Tuesday I was bleeding a lot more and got scared and called the Dr. they said come and & we will check everything. Again baby was found with good heartbeat and my cervix was closed from what he could tell (he did an internal check). So I was told I was bleeding because I was m/c the twin that didn't make it or having normal pregnancy bleeding and that I was fine.
Then came Wednesday morning...I was talking to a friend on the phone when I started cramping very strong, I told her I had to let her go. I then felt the urge to go to the bathroom along with a very strong contraction. I went to the bathroom, just barely closed the door, pulled down my pants and out fell a sac. As I did that my 3 year old opens the door, saw the sac fall on the floor and saw me start crying. I asked as calmly as I could for my son to go get a container and my phone, he did as he was told and I called my husband to come home because we needed to go to the dr. I called the dr, they told me to head in there and they would work me in the schedule. I had an u/s immediately where it showed I passed my baby (no more sac inside the uterus), I kept the sac in a container and baggie for my dr to send to pathology. They were concerned with the abnormal sac being a partial molar pregnancy and for this reason they wanted to have a d&c. So I was scheduled for the d&c later that afternoon. The dr that did the d&c made the comment that there was "products of conception" still in the uterus so it was good I had the d&c. He wanted me to heal up for 2 weeks then to come back and they would look for the iud.
So 2 weeks went by and I was very constipated and having a BM was painful and hard. But I never even gave it a thought they were connected. My dr sent me for an xray and then when that came back, nothing was visible in the x-ray. The OB said my bowels were extremely constipated, so they wanted me to do a bowel prep with a x-ray following the next day. So I did the bowel prep with the magnesium citrate and got so sick I was throwing up, having watery BM's, and was dehydrated. I had to go to the ER the night before my x-ray to get fluids because I got a migraine (and we are fearful when I get a migraine that it will turn into a hemiplegic migraine). We then went for the xray the next morning and there was the iud, clear as day on the xray.
The DR then talked about removing the mirena with laproscopy on his next surgery day. He said it would be a fast procedure. I had to do another bowel prep for the surgery. That bowel prep was extremely painful and I was now bleeding from my bottom every time I went and the pain was torturous. I had my surgery and the surgery was a bit complicated as they couldn't find it and had to do xrays. Then they found it. It was in my large intestines down by my rectum. I had lots of scar tissue according to my operate report. The DR even provided pictures. He said he never seen or heard of this situation of perforating my uterus and my bowel/intestines!
Even when I went back for my surgery follow up appointment he said he cannot find another story like mine in the medical journals. I was glad it was done with and definitely will NEVER recommend the mirena to anyone I know. I realize my situation was probably a one-of-a-kind situation, but for me it happened. Who's to say it doesn't happen again to someone or worse ... perforate a vital organ and kill someone?
So this is my nightmare...I got mirena, it sometime perforated my uterus and I wound up pregnant with twins. Then I had to go through that emotional roller coaster of being upset, to accepting, to happy and excited, then to the feeling of loss of my child(ren) for miscarrying them which no one should ever have to go through that pain. Then I had to endure the pain in my rear when is sometime perforated my intestines and had to have surgery to get it removed.
Who knows what the long term effects will be...