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Raven’s Story (Endometriosis)

Ravens Story EndometriosisHi. My name is Raven. I’m so thankful I came across this page. I was playing Trivia Crack, and there was an ad for it. I just had my first lap surgery in November and have felt kind of lost and confused after just finding out about my diagnosis in October! This disease has consumed so much of my mind without me even knowing a name for it.

I’ve known something was wrong with me since I was 18. This will sound a bit crazy, but I got married immediately out of high school and, not long after, stopped being careful sexually. We figured we were married, so if we became pregnant that would be exciting, and if we didn’t, then it wasn’t time yet. Well, after a while, it got to the point where it was frustrating. Although at first we weren’t all that concerned with becoming pregnant, after so long, it was almost expected to eventually become pregnant. I went and saw numerous gynecologists, all saying it just takes time. I explained to them that I had extremely painful periods and irregular cycles. Again they said, all normal and it will just take time. After so long, me and my husband split up. We were young kids when we got married, and neither of us took into consideration what being married really meant. On top of him desperately wanting kids, I carried on with my life, moved to the city, and kind of enjoyed my freedom. Not being concerned about not being able to conceive anymore, I stopped paying attention to my periods and what symptoms came from my period. I knew I was miserable for one week a month, but like the doctors said, it was normal!

Then, I met my now fiancé. We aren’t married, but he wanted to try to have a baby. So after some time, we eventually did start trying. With no luck, we just stopped being concerned with it. If it happened, it happened. Now, back up some. Every time I’ve had sex from 18 on, I’m now 23, it’s been horribly painful. I never explained that to doctors because I had talked to my mother about it, who told me painful sex is normal. Well now I’m living a more settled down life with my fiancé, and we are trying but not consuming our lives with having a baby or not having one. But I started keeping track of my periods and my symptoms.

At first, I thought I was insane. I had the obvious “normal” symptoms: horrible cramps, heavy bleeding. But I was also noticing severe leg pain, lower back pain which is supposedly normal, but it radiates from my lower back down my legs, stomach pains right under my ribs, and nausea. I saw a gyno and explained my symptoms that I had tracked and that I had been trying for a year to get pregnant. He found nothing. He told me that I should be used to the pain by now and some people take longer to conceive and something about women having miscarriages and not even knowing it and mistaking the miscarriages for heavy bleeding. I totally disregarded that but also lost hope. I just gave up! I became very depressed but kept it to myself. I still am now but, again, keep it to myself. I went months just dealing with the symptoms.

I switched from a job that I had for the last 6 years to a new, more high stress level type job working with developmentally disabled adults, very similar to nursing. Lots of lifting and pushing and heavy lifting. I started experiencing severe pain, and the leg pain was constant, regardless of my period, and sharp stabbing pains in my back and side. I went to the ER and was told I have a cyst. I was sent to another gyn. They said it will go away on its own. Returned to the ER and was ignored. He acted like I was an idiot for showing up twice with the same problem. He already made it clear that it was “just a cyst!”

Finally, a friend referred me to her Dr. Richard Naggy! I now adore this man. I went into his office and was very insecure when explaining myself. He assured me I was not crazy and said, you have endometriosis!!!!! Finally an answer. I know this is long, but I haven’t had much time to sort out my own thoughts yet, and this is the first time I’ve been able to feel like I can just vent!! Anyways, he scheduled surgery for the next week because I had a cyst that was filled with blood, and it was bleeding out and causing pain trying to rupture. After surgery, he told me I had stage 4 endometriosis and endometriama. I have a tumor in my left ovary, and it’s twisted around to the other side, kind of like a candy wrapper, how they twist at the ends. I have scar tissue from where the endo has been there for too long. I know there is a better word for it, but I can’t think of it. He said he got as much as he could and gave me the shot to put me through menopause. I have 3 more months of menopause, and then I get to see a fertility specialist. The pain is miserable with endo. I always thought I was just being a baby and everyone was tougher then me. But I don’t even care about the pain. I’m just praying this doesn’t stop me from being a mother.

This is probably the most unorganized story on here, and I don’t even care! This thing has truly made an impact on my life in such negative ways: my first marriage not being able to conceive and the depression that has brought on, to being worried that maybe I won’t ever be able to give anyone children. My fiancé now doesn’t want to adopt. He wants his own. He says we just won’t have kids. But honestly, that doesn’t work for me. He has 1 child. If I can’t have my own, I want to adopt. I don’t need a man in my life who doesn’t want me just because of something that I have no control over, and he wouldn’t leave me, but now I’m stuck with the fact that it isn’t fair to me that I can’t have any kids because he only wants them naturally. This disease has consumed too much of my mind. And the menopause has me thinking I’m losing it!

Raven
Missouri
Submitted 01/22/2015

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 story 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.

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4 comments

  1. I have went through the same thing. Mine started at age14, I had 3 laps by the time I was 18. They told me the shots were the only possible cure and they couldn’t guaranty anything. Now 29, and still dealing. Nice to know there are others out there.

  2. I’m hoping to have kids before I have a hysterectomy but I’m not going to wait too long. If I have to I’ll adopt. My fiancé and just split up over the last few days so I now know I won’t be having kids anytime soon. I’m not trying to get pregnant by just anyone. But honestly I can’t wait for the hysterectomy. When they did my lap they found a tumor in my left over no cancer but it’s a chocolate Tumor? Which is why I actually ended up in the er not the cyst but even with the shots they pain is still there! I think the worse part of the shots are hot flashes.. They are terrible. Your not in this alone. I’m sorry that you have to go through it! I know it’s not life threatening but it’s still a very emotional and mentally draining problem! It really sucks! We will get through it! Thank God that when God decided that period was a good choice that he also decided that eventually we could retire so with either the hysterecomy or Gods natural retirement of real menopause eventually we will get past this! Lol

  3. Monday started out as a completely normal day when I went to work, felt fine, came home, had dinner with my boyfriend and sat on the couch to watch tv. Around 9pm I started getting terrible pains in my lower abdomen and I felt like I could vomit, I took some midol and went to bed with a heating pad on my stomach, having to lay on my stomach all night. The next morning I woke up for work around 6:30 showered got ready and by the time I was about to walk out the door the pain increased, I was willing to suck it up through my 9 hour shift sitting at a desk but it hurt to even walk. So I called my Boy Friend and had him take me into the walk in clinic, one pap smear, urine test, ultra sound and blood draw later I found out I had a cyst on my left ovary with the concern that I had endometriosis. They scheduled an appointment for Wednesday to get a Transvaginal Ultra-sound and meet with an OB Doctor. With awesome pain medication I made it through work on Wednesday and showed up for my OB appointment around 4:30pm. When I got there I was terrified and my bf came with me but it really didnt ease my racing mind of thinking, what if I really do have this and I cant have kids? How long am I going to be in pain for? What is going to happen? I felt so hopeless, and I still do. During my visit my OB told me I have Endometriosis, Haemorrhagic ovarian cysts, and a tilted uterus. She sounded pretty confident it wont affect me having kids but im terrified. I been having these pains since I was about 15 years old and have been checked multiple times and this was the first time I actually felt like I knew what was going on. I been in a serious relationship for almost two years now and we always talked about kids and marriage. My biggest fear is getting married, not being able to have kids and it causing an issue in the marriage. I really enjoyed reading this and glad I found this Blog 🙂

  4. I’ve been dealing with depression since my diagnosis about a month ago. My boyfriend doesn’t understand what this does mentally to a woman. It’s like you feel as if part of your womanhood has been snatched away. Everyday I think about me not being able to have kids. Especially because I’m getting married in November. It really hurts my feelings and sends me into the deepest funk. I have an appointment Wednesday and really hope that something can be done.

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