Marie's Journey

By seaturtles415

2 min read

I have never had an easy period as if they were meant to be in the first place. I started a few weeks shy of my 13th birthday. I was born with Spina Bifida and treated as if I would never reach womenhood. Therefore when I got my first period I was scared as heck. Normally if I bleed from well you know. It was because when I cathed myself I poked myself in the wrong area and caused bleeding. However it didn't last ALL DAY LONG. So I went on to find out from my mom who welcomed me into next stage of life.

Cries falling on deaf ears.

As time went on I grew to hate my period. I often complicated at my physical of my period being unbarring but was told to live with it by my female pediatrician "things we'll get better" After her I saw a female Family NP. How took my Spina Bifida issues more seriously thankful than the last. However my unbarring periods were overlooked. She eventually moved to another part of Wisconsin I moved my health care to a completely different hospital/ clinic. We're yet again I compliant about my periods being not bearable. Again my pleads and cries fell to deaf ears of a fellow female. In December of 2018 til August of last year I was a wits end an unsure of my next move.

Finally the support I need & deserve!

I talked to my urologist and told him that I felt like my kidney was going to burst only during my mense he looked at me and said it was probably my pelvis and though not his department he'd get me the help I needed. This was music to my ears literally. I was so over joyed when he listens though knowing him since I was two years old I knew he would I was relieved to get someone to listen to me, although it took me months to find the confidence to ask a man for help I'm so glad I ask the right one. The following month I started seeing the OBGYN he suggested. I got an ultrasound done a week from my first appointment. That showed us to be inconclusive, and with my Spina Bifida, it's harder to narrow down a conclusive reason for my symptoms. We decided to go with Depo shot first but with my migraines with aura it makes med treatment impossible.

Am I alone?

So far it's been four months but I'm doing okay except this last shot (my second) isn't responding to my body as the first did. Some times I feel worse then others however I was warned things get worse before better. I'm just looking for people in same situation that can put judgement aside and love a person for them. Also any tips of dos and dont's would be most appreciated. Again I'm Marie an I am 31.

Please share your experiences in the comments below or share your personal story with endo here.

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Kimberli Davino Member
Hi Marie, <inline-mention user-id="2059343" username="seaturtles415"/> . Thank you so very much for sharing your story with us. You sure have been through a lot and we are so proud of you that you continued fighting for answers knowing something was not right. What a warrior. We are also happy to hear you have a doctor who is trying to help you right now. Unfortunately, if they did the ultra sound, and you are thinking endometriosis is what you are dealing with, many times it will not show up on ultrasound. The Golden Standard treatment is excision surgery with an endometriosis specialist. Has anyone talked to you about this? There are many GYN doctors out there who first put their patient on the shots before considering surgery. Mine tried to do that and I said and moved on to the next doctor until one would perform surgery. So if you have not done this yet, I definitely recommend reaching out to an endo specialist. They may be more helpful. Just know, you certainly not alone <3 Wishing you luck and hoping you have begun to find some more relief since you last posted this! Here if you need to chat or have more questions. -Kimberli (Team Member)
1. seaturtles415 Member
 My first OBGYN and current one I started seeing a year ago well not put me through surgery to find out if I do indeed have endometriosis because I have Spina Bifida I have urological issues an had surgery at a young age for my bladder. Therefore because of scarring an my bladder being surgericaly made bigger with small intestines that they would ruin my bladder or would not be able to go around my bladder with a camera because of the size of my bladder. But my symptoms definitely say I have endometriosis. I was on depo preva. But it wasn't helping an we figured that out in first six months. So I switched to Lupron so far my symptoms are more tolerable but not gonna lie once a month I still get killer cramps but thankfully no effects.
2. Kimberli Davino Member
 Well we are happy to hear you have something that does seem to be helping you, even if it is just a little bit. Truly hope you continue to find relief dear <inline-mention user-id="2059343" username="seaturtles415"/> <3 -Kimberli (Team Member)
Kimberli Davino Member
Hi there <inline-mention user-id="2059343" username="seaturtles415"/> . I just wanted to swing by and see how you have been doing! Hopefully well. -Kimberli (Team Member)
1. seaturtles415 Member
 I'm okay just going through alot with this pandemic an staying off socials with all the pandemic and politics. Ugh it adds to stress and endo symptoms.
2. Kimberli Davino Member
 I absolutely understand that and can relate dear <inline-mention user-id="2059343" username="seaturtles415"/> . Do what you need to do <3 I am trying to stay off a bit more myself. Sending you hugs and good thoughts. Know you are not alone dear warrior. -Kimberli (Team Member)