Journey to my Stage 4 Endo Diagnosis
I am coming up on my 1-year anniversary of my laparoscopic surgery for endometriosis. I am in such a better mental space than I was a year ago. I no longer feel as though my body is attacking me. While I do still have some daily pain, it’s not debilitating.
I think it is so important to share stories of endometriosis. While symptoms can vary from each person, a lot of the time, the story of being dismissed by medical professions for years is the same. I will continue to share my stories, among other’s stories, until this horrible disease is taken seriously and is getting the attention in the medical field it deserves.
As of Feb 11th, 2021, I was officially able to claim that I am a part of the 1 in 10 affected by Endometriosis. The only true way to be diagnosed is from having laparoscopic surgery to have a biopsy taken.
First, I’ll tell you about what endometriosis is. Endometriosis can be an extremely painful chronic disorder in which tissue that normally grows and lines your uterus, grows outside of the uterus. It can commonly be found in your ovaries, fallopian tubes, and the lining of your pelvis. The best visual way a nurse first described it to me is to think about if you step on a piece of gum. When you lift your shoe, it’s all spread out and such. That is what endometriosis looks like within the body.
Typically during your period, your uterus sheds its lining, however with endometriosis, wherever lining may lie within the body, it also sheds there. In some cases, the endometriosis becomes trapped without an exit to leave the body, causing cysts called endometriomas to form. This can then lead to adhesions and fibroids to form.
Here are some of the most common symptoms:
Painful periods
Pain with intercourse
Pain with bowel movements/urination
Excessive bleeding
Bleeding in between periods
Infertility
Bloating
Nausea/brain fog
Unfortunately, I was dealing with all of these symptoms and my uterus was a tangled web with all of these things: endometriomas, cysts (From PCOS)m and fibroids. The pain was the worst part for me. When I knew my period was coming, I would try and grocery shop so we had easy food for me to eat, laundry done, and clean even more than normal because I knew I would be mostly bed ridden for 3-5 days.
I would have to lay with a heating pad at all times. I would count down the minutes until work was over at 5pm so I could lay in a hot bath. Heat was always my ultimate best friend. There were days I felt so sick and the back/abdominal pain was so severe, that I would try to shower and I would have to sit down because I couldn't physically stand. The pain also gave me so much brain fog that it was hard to think straight. The excessive bleeding was so bad, I’ve had to call the doctor about the amount of blood I was losing. I couldn't eat for days at a time but would try and force down some ramen because I felt very weak. The bloating was so big and painful, you would think I was 7-8 months pregnant, and nothing would help it go down. I also wouldn't be able to use the bathroom for days at a time. All these things are not normal symptoms.
The best way to describe my pain is- it basically feels like someone is raking your insides with knives while also having sharp stabbing pains in the abdomen and lower back. Certainly not a good quality of life.
For most of my life I have been on birth control, which really masks a lot of the terrible symptoms I mentioned. And when I got off birth control in June 2018, my symptoms were nowhere near this severe. It was only within the last 12 months leading up to my lap where my symptoms started to get worse. It was no longer just flare ups during my period, but some months I would have two periods, some months I would be in pain each day, there was really no rhythm or reason. And that is really when I think I turned into a shell of myself in the Fall of 2021. I literally felt crazy. I didn't think there was a way this could get better. I have always been in good health, yet it felt like my body was attacking me and I couldn’t find a remedy for any comfort.
We were nose deep into our fertility treatments and I had my eye on the prize: A baby. I kept thinking to myself, it’ll all be worth it once we had a baby. At this point, I was having pretty regular ultrasounds about every other week. So, as they were checking my follicle count each month, they were also monitoring the fibroids, adhesions, and endometrioma sizes.
In Sept 2021, my doctor scheduled a call with me to go over recent SHG (sonohysterogram) test results. I was nervous because anytime a doctor schedules with you directly, it’s typically not good news. We were on our way back to Michigan for my brother-in-law’s wedding and just did our 2nd round IUI that morning before we left. But when he called us in the car, he said he noticed the adenomyoma & fibroids had been growing since my last SHG in June and that he wanted to keep an eye on it.
I was nervous but still hopeful because we just did our 2nd IUI and I was hoping to be pregnant after the dreaded Two Week Wait. It was a long, sober wedding weekend; my hubs and I did a great job of ‘sneaking me drinks’ because typically I like many drinks. But after the TTW, I wasn’t pregnant and I was devastated. My period came in October, freaking twice, and that was sort of the last straw.
I had another consult with my fertility doctor and he said, “Well, which is more important to you right now, having a baby or taking care of the endometriosis?” That was a very difficult decision for me. If you are trying to conceive, you know what it’s like to want sometime so bad but it’s not happening, but after having conversations with my doctor and my hubs, Andrew, I knew what the right thing to do was. I begrudgingly said we would hold off on additional fertility treatments and proceed with surgery for me to ultimately take care of my own health. As much as I hated it, I knew it was the right thing to do. There was no point in us paying thousands of dollars for additional fertility treatments if this was something that could help our chances to concieve in the future.
The endometriosis is the main cause for my infertility and having the surgery really helped “clean everything out”, so our hope was that we would be able to get pregnant once healed. They even said some women are able to get pregnant on their own after surgery, so that sounded promising.
As I was working on my own health, I really felt like I was going through the 7 stages of being diagnosed with a chronic illness.
Shock- As I said earlier, I have always been pretty healthy and not major illness. So, to now have this hidden illness that is very hard for others to understand (even myself) was very challenging. Outwardly, I look completely fine and no one would know about this battle I have been dealing with.
Denial- I have cursed, cried, and pleaded with God and I’m not even a religious person. I didn’t want to accept this was my new ‘normal’ that I would have to just live with.
Grief- I was terribly sad and grieving my former self. I didn’t want to be this depressed, in pain, miserable person. I wanted to be the fun, full of life Jenny!
Solitude- It felt like things were falling apart. Women have periods every month and are fine and I just felt like I was very alone in this.
Acceptance- I have finally accepted this and am looking forward to getting the help I truly needed.
Embracement- I am proud that I am at a place where I can talk about it without crying which has opened up a world of support for myself that I didn’t know I truly needed.
Advocacy - Helping others become educated about endometriosis, hoping women out there are not feeling alone, and starting a conversation that should be had more.
Here are some tips that I want to share if you think you may have endometriosis but could also be taken for another illness:
If your doctor disregards your symptoms, get a 2nd opinion. Find a doctor who will have your back. I had been telling my gyno for two years about these symptoms and it was met with take some Midol, which doesn’t help me. I love my fertility doctor and I wouldn’t be where I am today without him. I’ve probably met with him a dozen times the last 2 years and each time, he does a lot of the talking first to go over what procedure or test well do today, then well review results, but what I have found refreshing that probably shouldn’t be new is he then says, “Ok, I’ll completely turn it over to you. What questions do you have? What are your concerns?” And I think that openness and willingness to really hear from the patients is what has made this whole thing somewhat bearable for me.
Track your periods: There are a ton of different apps out there to track your periods, some more comprehensive than others but it has been helpful for me to understand the patterns from month to month. And in turn, I used this data to share with my doctor so they could understand the issues I was experiencing. Some good apps are Glow and Flo but there are so many out there!
Talk to your friends about their periods. I know it sounds weird but it’s certainly not and in my opinion, periods should be talked about more and NOT swept under the rug like society wants.
Find a support person. I am very lucky to have many women in my life who are open in talking all the women things. And by talking about it, I have found comfort in knowing I am not alone and so many of them have gone through similar issues of their own. I also have the most loving husband, who has literally helped me off the bathroom floor in the middle of the night when I was too weak to get up during a flare up.
Lastly, and be careful with this one, be your own advocate. Research on the internet, find women on Pinterest and IG with similar experiences. This knowledge, while a blessing and a curse at times, can help you think about questions or potential treatment options that you can ask your doctor about. I actually have found it refreshing to see more celebrities opening up about their struggles with endometriosis: Amy Schumer, Halsey, Tia Mowry, Mandy Moore, just to name a few. Halsey said it best, “With endo, you feel like a prisoner in your own body”.
This is dedicated to all the women who had to fight for themselves. I encourage you to talk to your friends and even family as I know endo can run in the family in some cases. 1 in 10 women are affected by endometriosis and sometimes it can take upward 10 years to find a proper diagnosis. I feel very fortunate that it has only been 3.5 years for me, even though the road to get here has not been easy. Unfortunately, there is no cure for this disease but there are ways to help alleviate the symptoms, surgery being one of them. I so thankful I was able to find a doctor who believed me and helped me reach my stage 4 endo diagnosis. Its weird that I felt a feeling of relief after my surgery, but it was because I found a source for my pain. It was not made up in my head, as I was told so many times before. Having surgery has helped me become a better version of myself because of it.
About the Author: Jenny, @thedailyjennypodcast
I live in Pittsburgh, PA with my husband and two pups. We began trying to concieve about 3 ½ years ago. Since we began, we have had three failed IUIs, 1 failed transfer, and I had laparoscopy of endometriosis surgery in Feb 2021, which led to my stage 4 diagnosis. My mission is to help other women feel less alone and advocate for both infertility and endometriosis. You can find 100% realness with a side of sarcasm in my content, because if we can’t laugh about it, we’ll cry, right?