Endo…My Journey with Endometriosis

About living with endometriosis: treatments, opinions and life in general


Leave a comment

2nd Injection

Well friends, today was my second Lupron injection. Feeling a little cruddy today- stiffness and soreness in both of my legs, fogginess, and fatigue (plus the regular pelvic pain). The nurse asked that I keep a journal to track my symptoms to see if they get worse near injection time or not. I asked her today if there any other patients in the practice on the treatment. She said there was me, another lady that stopped mid-treatment and one person that was about to start and that has been all she has seen in the 3 years she has worked in the practice. I feel a whole lot better now that I have found several support groups on Facebook to connect with other women of all ages and walks of life!

Advertisements

Lupron Price!!

2 Comments

Lupron Price!!

This was the receipt for the first fill of my Lupron (this is with the copay assistance card from Abbe Vie). Since then, **fingers crossed** I shouldn’t have to pay anything for it since I have met all of my deductibles and out of pocket expense. My insurance is also looking at this as medical rather than prescription since I have to have it administered by my Dr.


Leave a comment

Getting your prescription filled….A battle all of its own!

Ok, so if you are taking Lupron, you may already know that the medicine is extremely expensive! If you are looking into it, beware, the sticker shock may be as bad as the endo symptoms. When my doctor first called the prescription in to my local pharmacy, my insurance company (Blue Cross Blue Shield of NC) denied the claim, saying that since it is a specialty medication I needed to have it filled at a specialty pharmacy. The insurance company did a one time override to allow me to get the first injection and then after that I would need to use a specialty pharmacy (mail order pharmacy). BEWARE!! I was referred to Prime Therapeutics by BCBS and I called that same night to set up an account. They called my retail pharmacy to get my prescription. Since specialty drugs under my plan are covered with 25% coinsurance I wanted to verify the price. They said they could not give me that until they were ready to fill the medication a few weeks later. I waited for three weeks (when they were supposed to call me to set up shipping and billing) and they told me that my claim was denied and that I would have to use another specialty pharmacy. I was given options of CVS Caremark, Walgreens Specialty and Acredo. (I went with CVS Caremark.) When I called BCBS to find out why my claim had been denied, it turned out that Prime had submitted my claim too early. I decided after all of the trouble I went through with them to go ahead and switch to CVS Caremark. They seem to be a little bit more knowledgeable and courteous (I reminded these people that you really should not get an attitude with a 27 year old going through menopause, battling hot flashes during summer!!).

 

A Few Pointers When Filling Your Lupron Depot Prescription:

1. Go to the Lupron Depot website (www.luprondept.com) and apply for the Get Back Program which is a copay assistance program. They have assistance for the Lupron as well as the add back therapy. They also have a dedicated nurse hotline that you can call with questions or concerns about the drug.

2. Make sure you set up your account as early as possible with any specialty mail order pharmacy. It seems like they all overnight medication either to you or to your doctor’s office, but with as many issues as I have had getting my script filled, make sure you give plenty of time for the first order.

3. Take notes when you talk to these people. It seems like they don;t really put any notes in their system. The more information you have on hand, the better off you will be. I have a little mini-notebook i keep all of my prescription information, symptoms, dates etc in. It is a lifesaver!


Leave a comment >

Hot Flash

 

Well, I am just past the three week mark- next Friday I will have my 2nd injection. I am still battling hot flashes (boy did I underestimate the complaints of my older female friends and family!!) I was able to get a prescription for the add back therapy (5 mg of Aygestin daily) to help combat that. I seem to be overcoming the fatigue and headaches (still comes and goes but not as frequently), and I still have pain that seems to now be subsiding a little. I am desperately trying to take back control of my life and not allow this condition to rule my life. I have started going back to the gym as everything indicates that the best way to combat the fatigue is to keep energy levels up. I have noticed that when doing ab exercises, I do get pain on my right side (I have a fair amount of implants on my right side  pelvic and abdominal wall. I know I am not the most talented writer in the world, but I hope that someone like me will find this information useful. I know when I was looking for personal experiences with Endometriosis, I was inundated with blogs about infertility and trying to conceive. While I admire those who are trying to have children and battle this condition, I found it hard to relate to when I am not looking to have children. And when I tried to find personal experiences with Lupron, all I found were sites threatening to sue the manufacturer and advising against the medication. I feel that all options should be weighed for each patient and their situation and I know that I am willing to try almost anything to get rid of my pain! Anyhow, I just hope that this presents a little more personal, less scary experience!

And a tip for anyone suffering from hot flashes: These Poise hot flash comfort body cooling towelettes are a GODSEND!


Leave a comment

Week 2-3 Drag

Well Wednesday was 2 weeks sine I had my first Lupron injection. The first 2 weeks were pretty uneventful, I did notice a lot more pain than normal, but I was expecting that. The past three days; however, feel like I hit a brick wall. I have been so tired all the time and any little thing I pick up or hold makes my arms shake. I have also had a headache that comes and goes and the start of a few hot flashes. I am hoping this all evens out soon. I go back week after next for round 2.


Leave a comment

An introduction!

Image

 

Hi! I’m Jessica and this is my personal journey with endometriosis! I hope that my story might offer some insight into the disease on a positive note and maybe offer some hope for people like myself! This is a very personal disease, so it’s not always easy to find outlets to vent about concerns or issues. Endometriosis also seems to be centered around infertility and people who are trying to get relief in order to conceive or have children…. Not so much the case for me! My story seems to be a lot different from most of the personal journeys documented online, so maybe this will help someone like myself!

 

Anyhow, a little about myself. Like I said, my name is Jessica and I am 27 years old. I have a wonderful fiance, 2 dogs and three great step-children. I don’t have any children of my own, nor do I have a desire to have any- never did. I work full time as an insurance agent and my fiance is a truck driver who spends most of his time on the road. We have been together for going on 7 years. We enjoy camping, fishing, riding the motorcycle and just enjoying time together when we can. I also have a wonderful, supportive family spread out across the east coast. This year the family has had a few challenges, but like always we stick together to make it through and I don;t think I would have been able to deal with everything without them.

 

Ok, so on to the subject at hand! My mom has endometriosis, so the condition was something I was fairly familiar with- excruciating cramps, heavy periods, fatigue etc. I started having increasingly painful cramps about 5 years ago, and it seemed like each month they got worse and worse. I mentioned this to my doctors, who just gave me the usual advice to take ibprofen, use heating pads, warm baths etc. I have been on birth control since I was 16 years old and so several times they switched my pills to try and offer relief (also to help with a few instances of ovarian cysts along the way). No real problems until March of 2013. Early march I started having a lot of pelvic pain. I also had some unusual bleeding and pain after intercourse. I called my doc who scheduled me in for the following week, but in the meantime the pain got so severe I ended up going to the ER. While I was there I had several ultrasounds done and they found a cyst on my right ovary. I followed up with my doctor who did another ultrasound a few weeks later and found that it was not really going away. They gave me a stronger birth control pill to see if that would help. Several weeks later, I ended up in the emergency room again due to severe pain. At this point, i could not sit at my desk to work- I had to kneel or stand. I was not comfortable sleeping at night and I couldn’t even wear regular pants. They did another ultrasound and noticed I still had the cysts, but they were not as big as before. 

 

At this point, my doctor told me that he felt like I had something besides the cysts causing my pain. I was desperate to get back to living normally again. I took a course of antibiotics to rule out any kind of infection in my tubes with no relief. My doctor then scheduled me for an exploratory laproscopy to diagnose the cause of my chronic pain. I had my laproscopy on 5/16/14. When I came into recovery, the doctor told me that they found endometriosis and that he had two suggestions for relief: I could have a pregnancy (not in the cards) or he would start me on a 6 month course of Lupron. The laproscopy was really a pretty easy procedure with the worst part of recovery being the congestion I had from the anestethia (and from being flipped upside down during the procedure!) At my follow up appointment, the doctor told me that I had most of my implants on my right side around my uterosacral ligament, pelvic peritoneum and implants with pretty significant scar tissue over my bladder. He again went over my options and I opted to go with the Lupron. I was warned that it would be pricey and that I would go into a 6 month medically induced menopause. I was so ready to have relief from the pain that I returned the next day with the Lupron Depot kit, ready for the injection. I had my first monthly injection on 5/28/14. The shot was a scary looking contraption with a complicated syringe and it took a team of 2 nurses to administer since only 1 in the practice had any knowledge of the medication. The injection felt similar to a tetanus shot. It wasn’t too painful at first, but my left and hip were sore for the rest of that day and night.

 

I am almost to the two week mark and I have noticed the flare up of symptoms I was warned of- the past week has been excruciatingly painful. I have also noticed a little trouble sleeping, headaches and tiredness, but nothing too overwhelming. I am just so ready to get to the pain free days!