My Endometriosis Journey- How differentiating health problems makes a huge difference
When I think back to when I had some of my early menstruation cycles, I think of large heavy duty pads, killer cramps, worrying about leaking out of pads/tampons, and everything being a nightmare. I was told that this was womanhood and "normal".
Trying birth control first
I was put on birth control pills around age 14 to help with my menstruation cycle. The goal was to help regulate my cycle, make my cycle less heavy, and just all around give me some relief. That was not the case and I ended up trying multiple other methods throughout the years. I tried multiple oral birth control pills, the ring, and then I finally tried the birth control bar that goes into your arm. The first bar I had in my arm went really well. I had bleeding for about 3/6 months and then I didn't have a cycle for 3 years. I then got my second bar placed and I wasn't as lucky. I had regular periods with bad cramps. I was also starting to have really heavy periods again. During this time, I had noticed that my cycle was causing me a lot of pain and trouble again. My periods would last almost 3 weeks, they were really heavy, I was going through tampons and pads super quick, my cramps were so painful. I was also noticing I was having pelvic pain without my period.
Exploring with pelvic ultrasound
I brought this up to my doctor and they wanted me to have a pelvic ultrasound done. During the ultrasound they found a cyst on my left ovary by coincidence. That weekend I remember I went to the ER because I was in so much pain. I had never experienced a pain like this before in my life. I honestly thought that I wasn't able to get up to go to the ER. It was one of the scariest moments of my life. The ER doctor brought up to me that I might have endometriosis. The only thing that they did for me at the ER was give me pain medication and another pelvic ultrasound. My cyst was still present but nothing had changed since earlier in the week.
Laprascopic surgery bringing answers
I followed up with my regular doctor and they sent me to a OBGYN specialist in the area. Her name is Dana and I met with her twice and she agreed to do the laparoscopic surgery to find out if I had endometriosis. We scheduled the surgery May, 2019. Surgery day happened and they found endometriosis, and a lot of it. I had endometriosis all over the place in my abdomen, pelvis, and attached to my bowel wall. She told me that she got rid of 90 % of the endometriosis. That sounds like a good thing, but to some of us on here, we know 90 % isn't good enough. If there is some endometriosis left, it will keep growing and growing. Dana was not an excision specialist and told me that the other 10 % was "impossible" to reach. My surgery was supposed to be an hour long and it ended up taking her three hours. After my surgery she told me I would be fine to go back to work after 2/3 days. It took me a good 3 weeks to feel back to normal. My post op visit with her was not ideal. She said that I needed to choose a new birth control option to keep my endometriosis from growing back and she pushed me to get an IUD. I agreed and went back another date to get the bar out of my arm and the IUD placed.
Getting an IUD implanted
HOLY COW! I have never experienced so much pain in my entire life! IUD placement was the most painful experience ever. My body hated the IUD. My body had labor like contractions for 6 months because an IUD is a foreign object in your body and it wants to push it out. My experience was awful. At this time I was on birth control pills and the IUD to keep my hormones suppressed. I told Dana that the IUD was causing a lot of pain and she didn't really care. She said I had to deal with it because I had endometriosis and need to be hormonally suppressed. I was also having bad endometriosis pain about 6 months after the surgery. I felt defeated. Dana told me that there wasn't anything else she could do for me. I was very frustrated with Dana and decided I needed to get a second opinion.
Realizing I needed a second opinion
At this point I started doing my own research online and became apart of some support groups on Facebook. I was looking at the Lupron injection, the new Orilissa drug, hysterectomy, natural supplements, literally anything that would stop my pain. I went online to look at OBGYN specialist in my area and I found one that used to come into my workplace. I booked an appointment with him and hoped that I would get some answers. His name is Scott and he is absolutely amazing. I told him what had happened with Dana and he decided to take me on as one of his patients. He had a lot of ideas but we had to jump through insurance hoops first.
Finding relief with my new specialist
We started off with doing the Lupron injection first. I did 6 months of these injections. They really didn't help with my pain. I had the menopausal side effects, like hot flashes and mood swings but I wasn't getting pain relief.
After the 6 months, we started Orilissa. At first this drug made my symptoms worse. I hated taking it but I am so thankful that I stuck with it. After 3 months, my pain drastically improved. Yes I have menopausal side effects like mood swings and hot flashes but I would take that over the pain I was having any day. My mood swings were getting really bad so my regular family doctor put me on a mood stabilizer to counter act the medication. Now being on Orilissa since June 2020, I don't have a cycle, I don't have endometriosis flare ups or pain, I don't have pain with sex, and I actually have a sex drive (with Lupron I did not). It has completely changed my life. During the time of taking Orilissa, I found out I have a bladder condition that I always thought was my endometriosis flaring up.
Finding out I had interstitial cystitis as well
I found this out from a girl on one of my support groups. I have interstitial cystitis and I'm also taking medication for that and going to pelvic floor physical therapy. Now that I found out the difference between bladder, vaginal, and bowel conditions, it's so much easier telling when my endometriosis is actually causing a problem. I strongly recommend bringing up bladder and bowel concerns to a doctor to see if it's actually endometriosis or if it could potentially be something else.
Moving forward with my journey
At the end of this month I am going to the Universities Hospital to see some of the best doctors for my interstitial cystitis and endometriosis. They specialize in uro-gynocology. I always wonder if I will need another excision surgery or if Orilissa really is a "magical" drug that will keep me doing well forever. I just really hope my insurance keeps covering it because it is very pricy! Hopefully I will have some good updates after I go to my appointment at the end of the month. Thanks for getting to know me and my story! - Marissa
Do you know what your endometriosis phenotype is?