My Endo Story

By Murraymint

1 min read

I managed to convince myself for years that my pain was normal, just slightly bad periods - but all girls get them.

Then when I was 18 everything changed

All of a sudden I was getting UTIs all the time, my periods were getting worse, and then slowly over time, I started getting the cramps. After multiple doctors and A&E trips, I was referred to a gynecologist, but covid put a pause on that.

"Girls are always complaining"

I was put on high painkillers which I am still on 2 years later, and a couple of A&E trips where doctors tried telling me it was all in my mind and it couldn’t be endometriosis. Even the gynecologist didn’t want me to have the laparoscopy because he said “girls are always complaining to him about painful periods but it rarely is anything so not to get my hopes up.” Well a few months later I was waking up from surgery, and they said it went well, and I did indeed have endo.

Still struggling

It was one of the scariest days of my life; because of covid I had to be alone the entire time, but I had to wear a mask the entire time when I got put to sleep and when I woke up - the mask was back on! Now I’m still struggling, the pill isn’t managing to stop my periods. I get them for 2 weeks at a time with only a week in between, so am hoping to get put on the waiting list for my second surgery soon!!

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Keri Wiginton Member
<inline-mention username="Murraymint" user-id="4590050"/> I'm sorry to hear that your doctors dismissed your pain for so long. You're definitely not alone in that experience. I'm glad you're finally starting to get some answers, but that sounds like a lot to go through alone during covid. I hope you're giving yourself some grace as you heal. Like you, I also had a lot of trouble with birth control pills stopping my periods. As in, they never worked and also made me feel worse. Progestin-only pills actually made me bleed for 3 months straight. Surgery has never helped any of my period pain — I likely have adenoymosis, and I'm not ready for a hysterectomy. But I do take a prescription anti-inflammatory that helps during my period. If you haven't already, you might want to ask your doctor medication to treat your heavy bleeding or a different kind of hormonal treatment. I've never tried it, but the Mirena IUD has stopped or lessened bleeding in some of my friends. And studies show it's often more effective at helping endo pain than other forms of birth control — such as pills. It's worth asking your doctor about if your current method isn't helping. I'll leave some articles with you in case they're helpful. Wishing you well, and keep us updated on how you're doing! - Keri (endometriosis.net team member) https://endometriosis.net/clinical/iud https://endometriosis.net/clinical/tranexamic-acid https://endometriosis.net/living/period-pain-treatment https://endometriosis.net/living/symptoms-experiences
Kimberli Davino Member
 <inline-mention username="Murraymint" user-id="4590050"/> - it makes me so angry that so many of us have to put our pains and symptoms to the side and pretend they are normal and okay. I am so sorry you were dismissed like that for so long. Something myself and many of us can sadly relate to. And then to have to go through it all alone, makes it even more hard. I wish I could hug you. I am glad it does sound like you are starting to get taken more seriously and build a medical team with those who are trying to help. I will say birth control on any level, never worked for me. But everyone is different. It may just take a lot of trial and error to try out all different kinds of pills, the IUD, etc. Keri left some great articles to read. But I just wanted to remind you, you are not alone. Please reach out to us anytime you need. We are here for you. Sending the biggest, gentle hugs I can <3 -Kimberli (advocate)