My Story... Is It Endometriosis?

By Mrowkaser

4 min read

Ok so I got my first period really young. I remember it was right before Christmas and my mom was so upset. I know periods were supposed to be uncomfortable but I was not ready for what was to come.

What I experienced instead

My period eventually got heavy with the symptoms being severe migraines, nausea, and terrible mood swings. It even for to the point where I had to wear heavy bade and adult diapers to bed in hopes in wouldn’t bleed through. So as I got older I dealt with it as best as I could saying to myself all the other girls feel just as bad. As I got older I also started having boyfriends and therefore became sexual active. Once that came into my life I was thrown through some rough experiences.

It only got worse

My periods got worse and irregular and I even felt like passing out at certain points. Then came pain with sex and bleeding after or during, like a lot. So I went to my OBGYN I’ve always had since I was a teen. She did her exam and immediately decided I had pelvic inflammatory disease and needed treatment right away. She also then told me that because that’s my diagnosis that I needed to talk to my boyfriend because it’s from a sexually transmitted infection and that he was stepping out or I wasn’t being honest. So right then I was scared and shocked.

The treatment made me worse

I went through the treatment all for it to not work and make me feel even more sick. I then decided to try a new OBGYN. My boyfriend's mom at the time had been listening to what I was going through and told me I should look into and ask about Endometriosis. As soon as I met with this new doctor she said that it sounds like I have Endometriosis and began her version of treatment for it. They did a pelvic exam and ultrasound and said they couldn’t see anything that caught their eye, but that all my symptoms point to Endometriosis. They then began to throw me on all these different birth controls and medication has proven to help with Endometriosis.

It got better for a little bit

They all seemed to work for a little while but then eventually my severe pain and other symptoms came rushing back. I started with a birth control pill. Then went to Depo shot. It worked for about 6 months before some of my symptoms came back but I stayed on it for a year. Eventually they put me on Oralissa with that(both doses) in hopes it would help. The Depo seemed to not work after a while so then I was told to get an IUD(Mirena) and told I can keep trying Oralissa or stop it. Eventually, I chose to stop it because that didn’t seem to help. After that seemed to fail they threw me on Lupron(shuts down your reproductive organs) for 6 months with a medication to help with the side effects of essentially putting me into menopause. Yes, I still had the IUD as well. That was a very stressful time because I began to have mild menopause symptoms and feel very down in the dumps. It also didn’t help that it was costly to do this type of treatment. Eventually, my insurance cut off the Lupron which was ok because I started to feel crappy again.

Currently on Mirena

I am currently on just the Mirena IUD and some days are good but most of the time I have constant cramping that can be mild or severe, migraines, nausea, random bleeding, pain with sex(mild to severe) and bleeding after or during, and severe mood swings. I still have not been officially diagnosed with Endometriosis they are just treating me for it. Doctors exact words “it could be endometriosis. I mean I think it’s endometriosis based on all your symptoms and your family's history. So if it looks like a duck and quacks like a duck then it must be a duck.”

Experiencing new symptoms

Some new symptoms I noticed are I get severe bloat when I eat/drink or have to go to the bathroom. I also seem a lot more tired lately. Most of my pain/cramping seems to be on my right side and sometimes shots down my leg. I have tried almost everything they can recommend as they won’t do a laparoscopy because they say I am too young and it may make my chances of infertility higher. They say they also can’t see anything on the Ultrasound.

They suggest I get pregnant to fix my endo

They have gotten to the point where they keep suggesting I try to get pregnant to fix it but I’m only 23, not married, and barely get by with the job I have. I just don’t know what to do anymore. At one point I did request to go to a specialist but he even said I was getting the best treatment I could. There are some days where I feel like I can’t take it anymore. It also sucks because it seems like my boyfriend doesn’t quite grasp how I feel sometimes and I feel bad when I have to stop him during sex because I can’t take it anymore. So that’s my story so far.... hopefully soon I can get some answers and relief.

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Rebecca Ironside, MSPT Moderator & Contributor
<inline-mention username="Mrowkaser" user-id="4216478"/> I am terribly sorry to hear all of this. You have had no shortage of disabling pain and disturbance to your life, all because of endo-like symptoms. If it makes you feel any better, I read a great deal of research on endo. There are studies that show that women with the symptoms of endo who undergo laparoscopy don't have the endometrial cells to support the diagnosis. Which is confounding and confusing, I know! I have also treated several women with endo whose symptoms do not improve with pregnancy. It doesn't sound like that was something that was imperative to you in your life now anyway. I want to reassure you that even if you never get a diagnosis of endo (some people never do), your pain is very real and I am proud of the way you track your symptoms and acknowledge your pain. And one last thing...for the patients I treat with your symptoms, the care that is rendered is the same, even in the absence of an endo diagnosis. You have pelvic and abdominal pain and dysfunction. I know what that feels like and it isn't easy. But as I say to fellow sufferers, "We're not ones for easy". 😉
Kimberli Davino Member
<inline-mention username="Mrowkaser" user-id="4216478"/> my goodness you have been through so much. It is so frustrating being thrown all those different birth controls and being told to get pregnant. That was what happened to me so many times! Pregnancy is not the answer and BC may help but also just masks the problem as well. A lot of your pain and symptoms are exactly what I was dealing with right before my endometriosis diagnosis. Have you thought about seeing an endometriosis specialist? Sometimes they can be way more helpful than a GYN, and sometimes that isn't always the case. But it doesn't hurt to look. Nancy's Nook is a FB group and she lists endometriosis specialists in your specific location or surrounding areas. Keep fighting and being your own advocate. I hope you do get an answer and also some relief soon. Please, reach out to us anytime you need. You are not alone on this journey <3 So many of us here understand and are fighting right along side you! -Kimberli (endometriosis.net team member)