2 years ago I was happy and healthy. We decided our family was complete and I went to my OB GYN to talk about permanent birth control. I asked her about the Essure procedure. Essure is a system of PET fibers surrounded by a titanium nickel alloy spring to hold them in place. The PET fibers illicit a fibrotic reaction that is supposed to occlude the tube. In reality 10% of procedures are not able to complete due to anatomical abnormalities or device failure. Then, up to 10% of the women who complete the procedure will have some sort of long term side effects including back or abdominal pain or migration of the coils. Migration can be outside the uterus and the implant can get lodged in organs or the abdominal wall and cause fibrotic reaction outside the tubes, or the migration can be in the Uterus. Risks are pregnancy along with a tube in utero. I know two women who have lost their baby due to the implant puncturing the amniotic sac and causing premature delivery and ultimately death to the baby.
So that was a quick overview. Here is my nightmare…
I had the devices placed in an outpatient hospital setting under general anesthesia even though the literature claims one of the benefits is that it is in office. When I asked about this, my doctor told me that just in case they had trouble placing the devices, they could convert to a laparoscopic tubal ligation. Ok, that was fine, I wanted permanent sterilization no matter what. All went well, my doctor told me when it was all over. See me in 6 weeks and we will schedule your follow-up confirmation test.
Well, I was in pain on my right side. It felt like my tube was on fire. It is normal they told me. Here is some Motrin. It will go away as your body accepts the coils. Well, for the most part the pain went away, not completely but it was bearable, and for being sterile, I could handle it.
Well within 2 months, I had gone from a healthy, strong, woman, to being extremely fatigued and achy. My joints would ache all the time. I could barely stay awake after 1 pm. I went to my primary care doctor desperate to find a cause. He ran every blood test he could think of, including my thyroid and lupus and everything came back fine. So I left feeling defeated and depressed and thinking it must all be in head. I have dealt with this for 2 years. Sometimes I get so tired that I am nauseous and feel feverish. After exercise, when I could still do it, I was so fatigued and in pain for days afterwards.
All the while, at least once a day I would get a little twinge in that spot when the Essure coil is. Reminding me it was there. In August 2012, I started a home and hospital teaching assignment for a little girl bed ridden. I noticed every time I would reach across her or bend in to work with her, I was in pain on the right. I started getting pain at yoga class on up dog and side planks. I started not being able to bend over anymore without shooting pains from the front all the way through to my lower back like I had a knife jabbing me. Finally in November I went to urgent care when I had a constant ache in my right side.
I was scared I had appendicitis, but my blood work again came back normal. My urine though showed trace blood, so they checked me for stones. nothing, so she told me it was probably muscular and follow up with my primary. I did. He did not think it was muscular after a full exam. He sent me for an abdominal ultrasound. It came back normal. New Year’s Eve, I hade my first episode of extreme pain and his office told me to go to the ER for a CT scan. Everything was normal, and they sent me home. It was then my doctor told me I needed to see my gyn to talk about possible endometriosis.
So I called my OBGYN and I told them I was having pain, and I needed to be seen. I also told them that I was to tell anyone I talked to that I have Essure. the nurse was very sympathetic and told me they would work me in as soon as possible. Well, she called me back and said, I am sorry I had a spot for you, but someone else took it, and the DR can not see you for 3 months. I said well then I need to find someone who will see me now. I felt like they were trying to push me away.
I made an appointment with a local OBGYN who could see me within a week. He ordered an ultrasound and offered me birth control pills or an IUD. What? Really? I went off hormones due to high blood pressure and I expelled my IUD, that is why I got Essure. He claimed that this would take my painful symptoms away since I probably had endometriosis. I would find out later that you should NEVER get an IUD with essure. I asked him, since some of the pain was in the exact spot as it was after my essure procedure, could it be causing some sort of issue? He said no, it is extremely safe and FDA approved. There is no way it could cause any problems. This is going to get too long so I will start to summarize what has happened since this appointment in February 2013.
I have had 4 transvaginal ultrasounds, a CT scan, lots of lab work, an exploratory laparoscopic procedure that found adhesive disease in my abdomen (never had any other abdominal surgery, no C-section) found 2 suspect spots of endo, very small and neither came back on pathology and endo, went to an orthopedic got a shot of cortisone in my hip, endured a month of painful physical therapy, got a shot of Lupron to definitively rule out endometriosis, and finally got to a surgeon 6 months later who told me I needed to get these things out of me ASAP. Then, my insurance denied my surgery. What a mess! I cried for a whole day. I called 10 different surgeons that my insurance would pay to do it. Only one called me back. I have to wait until November now to get my surgery. They will be taking both tubes, my Uterus with cervix and right ovary. They will also have a general surgeon to come and deal with my adhesions.
The problem with finding a surgeon, is no one wants to mess with Essure. It is very brittle, and can leave fragments if it breaks. They don’t want to do the surgery.
Ok so why is it I am needing this? Here is a list of my symptoms. Constant pelvic pain that shoots down my leg and wraps around into my butt. Stretching, bending, lifting, slouching, torso twisting, any movement, intensifies the pain. I have pain with sex, and especially with orgasm. I also bleed after sex. Sometimes I have what looks like and lasts as long as a period after sex, internal exams and ultrasounds. I am so tired all the time. My joints ache, especially my right shoulder. I get these weird brain resets…they start at one ear and move to the next and my thoughts are completely reset almost like I blacked out. I started having a reaction to Naproxen and Motrin, and Tylenol does nothing. The doctor gave me tramadol but does not want me to get addicted so I rarely take it, and it really does not do much anyway. So I am just dealing with it waiting for surgery, hoping I can get through this. Every day I get more depressed and hopeless. I know how people who take there lives from chronic pain feel like. I just have to try to look forward to feeling normal again some day.
But I will be without my uterus and have a long recovery, because I wanted the next best thing since sliced bread put in my fallopian tubes. The company and the FDA knew there were going to be people who would have problems. They joked about it when they were approving the product. I have the transcripts. Yet they did nothing to educate doctors to handle patients who would react badly. My implanting doctor never told me I might get chronic pain and need a hysterectomy to repair my body. I feel betrayed by the FDA, Conceptus, and my Doctors who would not listen and put me through test after test, and rough internal exams, and insurance delays, when I could have fixed this sooner or avoided it all together.