My Endometriosis Journey
“I first started having symptoms back when I got my first period at 13. Ever since then, I remember excruciating pain and my Dr telling me to take 2 days off from school each month. And in my young mind I was like, absolutely not. What will I do as an adult with responsibilities? I can’t just take 2 days off from life.
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Unfortunately at this point in my life it’s not just 2 days out of the month that I suffer from my symptoms, it’s usually from 2 weeks before I’m supposed to get my period. And add PCOS to the mix, and you get an additional 2 weeks of suffering. It was clear that I probably had endometriosis, but no one would properly diagnose me without surgery.
So I've been dealing with horrible symptoms for almost a decade. Things came to a head after I gave birth to my daughter 15 months ago. I was told to go to a specific doctor (I needed vaginal reconstruction done) and I also asked if she could diagnose endometriosis while at it. Since I was going under anesthesia, I figured let's kill two birds with one stone. Unfortunately, this women is NOT an endo specialist and shouldn't have agreed to do the laparoscopy. I was in horrible pain which only got worse. (She did remove 2 cysts but I get them every month and they rupture on their own and go away themselves.) Thus began a journey of lots of gyno visits.
One gynecologist I've been to recently said an option was to become pregnant and all my symptoms will fly out the window. So since I have PCOS as well, it took over a year to get pregnant. Thankfully, now I'm pregnant, but all my endometriosis symptoms are still right where they started.
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Endometriosis is the most lonely disease to go through. When it comes to endo, you need to fight with your doctor to take you seriously! The next gynecologist I went to kept arguing with me that I definitely don't have endo. He said, "You're 22 and look great. You can't be in serious pain all the time. It's impossible."
That was until I walked into my doctor’s office after my last period and said, “I don’t want to get one more period. I feel like I’m losing my mind. My husband is getting frustrated with me and I can’t be a mother to my baby girl.”
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He gave me a pelvic exam which was excruciating. He felt around and said, “Yes, you have endo.” I actually felt him squeezing my insides long after his hand was out of there.
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But the validation I felt was incredible.
However, I'm now in the exact same pain as before. My legs feel like they're on fire all day every day and the only relief is having immense pressure applied. Think my 170 pound husband sitting on my legs to provide relief. And even that only helps while he's applying lots of pressure. I have a weighted blanket but that's a joke to the amount of weight I need. Does any of this seem normal? I don't cry from my pain anymore because I think my body kind of accepted this as my new normal, but this is pure insanity.
You see, women like me don't wake up happy to have another day to do beautiful things and accomplish wonderful things. Our first thought waking up is, "Please G-d, no pain today. Make me be okay."
We don't swim through life like every other women seems to do. We have to struggle to just keep our head above water. Many of us can't hold down jobs because of the amount of sick days we need to take. I've had to leave my full time job and work from home, but I still take days off and I'm afraid every day that I'll be fired.
Also, lots of us don't do well with hormonal birth control. It's really not a one size fits all. I've been on the pill and been suicidal. And I can't get an IUD because my uterus is shaped unusually. I'm just so unlucky.
Your discussion on sex is so applicable to me as well. Many people with endo suffer from painful sex. Or pain after sex. I can't tell you how many times I've consented and cried silent tears throughout because I felt guilty that I wasn't providing to my husband. Or laid in bed after and couldn't fall asleep for house because of the pain sex triggered. Not anymore. Thank gd my husband is so sweet and understanding and he'll never do anything if he knows it hurts me. And that's not even talking about the recurrent UTIs.
I know I'm very young to want to start an endeavor like this, but it's so needed! If there is a place where we can all offer support and advice, exchange doctors we've been to that have been helpful, that is exactly what is needed. And most of all for us to stop feeling alone against the world of people who seem happy and healthy and just be surrounded by love and support. Because for most of us, our spouses can't comprehend what kind of hell we go through every single day. And I hate burdening my husband who works so hard to provide for us.
I've posted other places as well, however for some reason there is so much stigma with these issues so no one wants to join a support group where you could see their name. Utterly crazy because everyone just ends up suffering on their own.
Thank you for allowing me to share all of this with your followers. I already feel so much better knowing that I will be soon connected to so many who feel the same way I do. There's so much power in being seen and heard.”