After everything I’ve been through, I figured that I would share my story with you. My name is Lanah and I have been battling Endometriosis for 14 years and counting. My problems started when I was 11 years old when I went through my first period. My periods would get so bad that I would miss one week of school each month…the week of my period. I would lay on the couch with a hot water bottle and writhe in pain. This lasted for quite some time which also caused problems with school, due to all of my days missed. Also, my immune system has always been very weak, so not only did I have to worry about my periods but I also got ill quite often. I also suffer from Raynaud’s syndrome (which I recently found out can be endo related) and Asthma. I have never experienced a day without pain. As the years went on towards the age of 14, I started experiencing severe gastric problems. I would have what I referred to as “attacks”. My stomach would suddenly start hurting extremely bad. I would wake up crying and balled up in pain.
I went to numerous doctors who couldn’t find anything wrong with me. I went to research hospitals and was checked for numerous diseases. Soon after, I underwent an endoscopy to see if my stomach was functioning. They found food still sitting there 12 hrs later; it was like my stomach was shutting down. The doctors eventually dropped my case as if, “oh well…all tests are normal, even though you’re obviously not…but we don’t know what’s wrong”. My weight went down to 100 lbs at one point; I couldn’t eat. Due to all of my Dr. visits and pain I ended up missing a whole semester of school. I caught up…though it was a long process.
My mother had mentioned endometriosis but we got the whole “she’s too young for that” speech and was told to be on our way. Little did we know we were right all along. My mother had severe period issues as well, leading to a 6 month no-stop period, resulting in her having a partial hysterectomy (ovaries left).
The years went on, I kept going to the ER at least once every other month if not more frequently and I just suffered with my period and GI issues. Not being able to eat, vomiting every day…it was horrible. I had gone to the ER so many times I was used to IVs, like they were nothing…never thought I’d be used to those. Every day I would wake up in pain, never getting more than a few hours of sleep a night. I’d throw up every morning and spend the whole day in pain. I dreaded going to bed because I just knew how horrible the coming morning was going to be. I was even told by Drs that everything was “in my head” because they just couldn’t find anything wrong. I kept going to Drs, every now and then, still receiving the “normal” test results. I went through life, enlisting in the US Military at age 17, attaining my LNA, working as a Zoo Keeper, and trying to live life as normal as I could. Eventually, at age 20, I moved across the country and my problems still persisted. At age 24, I found a GI doctor who performed another endoscopy and stated that my stomach lining was very thick, but could not tell why. I then found another GI doctor who performed electrical studies on my stomach and suggested endometriosis. Then, with his recommendation, I found a local women’s clinic. I went in and stated all of my issues and medical history. She agreed to do the diagnostic laparoscopy to check for endometriosis though she stated that she did not think that this was my issue because of all of my GI issues.
On March 7, 2011, my Dr performed the diagnostic laparoscopy (3 abdominal incisions). After the surgery, I woke up and the first thing I asked the nurse was “did she find any?” The nurse went away and came back. She told me that the Dr. indeed had found endometriosis. That was the first time in my life that I had ever felt such an amazing relief. Some people can’t understand why I’d be so happy to have the diagnosis. It was because I finally knew what was wrong. Proof that it wasn’t “in my head” or that I was “making it up”. Definite, legitimate, irrefutable, proof. I spent the night in the hospital and my Dr. came in the following morning. After talking to her, I had been diagnosed with Stage 3 Endometriosis. Now I knew what I was facing and I started treatment right away. I also found a pain Dr. that put me on Lortab and Neurontin for the pain. It helped but not very much.
I was also put on Depot Lupron. I was on it for 7 months. While I was on Depot Lupron, I did notice some relief from my pain. I read about a lot of people having bad side effects while on Depot Lupron, but I guess I was lucky; I did not have any negative side effects. I still had nausea but it wasn’t as bad as it was initially. My Dr. explained how I couldn’t stay on Depot Lupron for over a year due to negative side effect risks. After stopping the Depot Lupron for only a short time, I was right back in the ER. After getting out of the hospital for what felt like the 100th time, which was more literally like the 20th time, I went to see my Dr. to discuss further options.
After talking to my Dr. and being in so much pain for too long I opted for a total hysterectomy. She scheduled it for one week later. This is where another hard part came in. I had one week to adjust to the idea of having a total hysterectomy. One weeks notice isn’t very long to adjust to this. I wanted to have children…but honestly with all of the pain that I was in I don’t know if I could be off pain killers or treatment to even try and conceive. I also didn’t want the endo reaching my brain since it had already spread to my stomach, or traveling through my blood since I also have a circulatory disease (Raynaud’s syndrome). My pain was too unbearable and I could not live. I couldn’t hold a job, go anywhere, or enjoy life. I was not living…only simply existing.
Thankfully over the past 4 years I have had a wonderful man by my side who has been understanding of my disease. We got together before I was diagnosed shortly after I moved across the country. He went with my to the ER all the time, was with my for my diagnosis, and every surgery. Support is a very important aspect of dealing with this disease. Thankfully I have had my Fiancé, my parents, and my dachshunds. I also had to take him into consideration with my hysterectomy surgery. We are not married, but plan on doing so soon. He was okay with the idea of adoption or not having children at all. I did, in the end, have to make the decision for myself and no one else.
He helped me cope with the decision and helped me see the brighter sides of it. Being able to travel and enjoy life and adopt when I’m financially ready and stable enough. Don’t get me wrong, the thought of not being able to have a child runs through my head every day, multiple times a day. I just have to be strong and not let that hold me back from doing good in this world and enjoying life. I have to look at it as an opportunity. It gets hard when I see my friends online with Facebook and such with their children, knowing that it’s something I’ll never have. But I can have somewhat more freedoms now instead of being surprised by pregnancy. It is hard to keep seeing the bright side, but I’m trying.
On October 4, 2011, I went to the hospital to have my total hysterectomy surgery. I was so scared. I arrived to the hospital accompanied by my Fiancé and my parents. I went in to register for my surgery and I was in tears. The girl who was taking care of my paper work looked up and said “you’ll feel a lot better after this, trust me”. I asked her if she was familiar with Endometriosis. Come to find out she had undergone the same surgery for her Endometriosis. For her it was a success, though she already had a child. I finished my paperwork, feeling a little better after talking with her. Once up in my room, it was found I had a fever, but my dr decided to proceed with the surgery anyways. She came in and re-stated the surgery and made sure it was what I wanted. In my head I was thinking “of course I don’t want this…but I want to have a life”. I agreed and I was wheeled into the operating room, after saying goodbye to my family. Thoughts were racing through my head. I was torn. I wanted to have a child so bad. To experience that feeling in my body, to create life, to see my eyes in a child. Keep in mind I’m only 24 years old and undergoing a total hysterectomy. I felt speechless. I saw all of the equipment and stirrups. Those made me feel a little uncomfortable. The whole process of the hysterectomy hadn’t been explained to me as well as it could have. I was under the impression that everything was done via the abdominal holes…I didn’t know anything was to be done vaginally until the last minute. Not a fun surprise. Thou I did watch a good YouTube hysterectomy video. They put my mask on and to sleep I went.
Once I woke up, I was in so much pain. I asked for pain meds and they were already going in my IV. I spent the night in the hospital and was told to get up and start walking by the nurse staff the following morning. I did what I could with the pain I was in. I ended up having 5 abdominal incisions. I went home and began to recover, taking it easy, and slowly doing more activity as I could. Recovering physically has proved easier to deal with than the emotional recovery, though that is coming along at its own pace.
As for pain medications, recently my pain Dr. retired and I had to find another one. This new Dr has put my on a larger dose of Neurontin and put me on tramadol. Thou the tramadol doesn’t seem to do much, she is worried about the side effects of Lortab, so she’s trying to find something that works. It has only been a few weeks so I hope I see some improvement.
Regarding my GI issues, my Dr. thinks that the endometriosis had spread to my stomach. She found endometriosis all around. She said that if the cells were inside my stomach that she couldn’t do anything about it without damaging the stomach tissue. I currently use dissolving Zofran tablets (generic) to help with my nausea. Currently, for HRT, I’m using Evamist; it’s a spray-on HRT. I spray it on my forearm every day. So far I haven’t had any issues with it. I’m also taking Vitafusion Calcium supplements and multi-vitamins.
Having no insurance during all of this was very difficult. I charged most Dr. visits. I was able to get onto a county health program which paid for my Gyn Dr, who I was seeing for my endometriosis. My insurance money was running out so I had to get the hysterectomy while I still had funding. It’s not something that I was happy about being rushed into…but I was in too much pain and I was running out of options. If I waited, I may have not been able to get the surgery when I needed it. So I had to do it now.
I have noticed some improvement from the surgery, but I still have my bad days. Hopefully I start to have more good days than bad. My incisions have healed up well. It’s still hard to adjust to what has happened to me.
I went from 1997 to 2011 suffering, not knowing what was going on, wanting a child… to March 2011 being diagnosed with Stage 3 endometriosis… to October 2011 having a total hysterectomy. This has felt like a whirlwind of emotions and medical drama in such a short time. I can hardly comprehend what has happened in this short year. I know that this is a lifelong battle andI’ll fight through it with everything that I have. Through everything that endometriosis has done to me, it has taught me a few things. It has taught me to be strong, even when things are at their worst…I think about what I’ve survived and it gives me the strength to push through. It has taught me to be patient. There are a lot of things that we just simply cannot control. Life is uncertain and I have to go with it. It has taught me to be independent. I needed to do the research on my own and not stop when the Drs didn’t have answers. I kept pushing to find out what was wrong. It has taught me to be a survivor. Being in as much pain as endometriosis causes every single hour of every day, it has made it easier to get through other obstacles. I find myself with a constant attitude of determination and strength. Im ready to take on the world…probably because that’s what it feels like your doing every day with endo anyways. I am a warrior constantly fighting for the potential chance to maybe enjoy each day. Finally it has taught me even more so to be thankful. endometriosis has ripped away my life and my dreams, but I am thankful for the new perspective that it has given me. It has taught me that even if you lose something, you didn’t lose you. I cannot have a child, that dream was ripped away. I can still do a lot of good in this world, be it adopting a child, creating a helpful organization, or just helping others somehow. I can travel and still do good for others even thou I cannot do other things.
My whole life has been changed and new challenges have reared their faces. I’ll accept these new challenges and obstacles and try to live my life to the fullest. Thank you FLAGC for letting me share my story and thank you for taking the time to read it. I hope that my story has helped you in some way whether I have inspired you just a little or just the comfort knowing that you’re not alone.
“It’s not enough to simply exist; it’s time to start living.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.