Endometriosis – My Journey so far

Hey…

I never share about this. It is personal. and a giant pain in the ass. But this is part of my story and it is a goal of mine to help others. Well Sharing my struggles with Endometriosis may help others as well.

I started writing this 3 weeks ago and put it away. I don’t want to talk about it. But here goes.

Well What is Endometriosis?

It is when the lining of the uterus. The Endometrium grows outside of the uterus and attaches its self to the organs surrounding it (I.E ovaries, fallopian tubes, intestines, bladder, and even kidneys )

People may experience:
Pain areas: in the lower abdomen, lower back, pelvis, rectum, or vagina
Pain circumstances: can occur during sexual intercourse or while defecating
Menstrual: abnormal menstruation, heavy menstruation, irregular menstruation, painful menstruation, or spotting
Gastrointestinal: constipation or nausea
Abdominal: abdominal fullness or cramping
Also common: infertility
So basically it is a giant pain in the ass. Every case is different and this is mine.
I have had trouble since the first period, heavy and very painful. Miserable exhausted. I went through my teenage years thinking this is completely normal. Its not. some discomfort sure. But I remember curling into the fetal position and crying.
Tried several forms of Birth Control to try and control this and other problems occurred. Severe abdominal pain, and fast weight loss. Sending me into the hospital where they would test me and find nothing.
Get off Birth control and endure the pain. Endometriosis can only be found with an  camera. Fun right?
Hey here comes Brianna. I was 17 when I had her.
Put on mirena. I was determined not to have 2 children out of wed lock. While on mirena, I had constant migraines and pains. But never associated the 2. I did not know I had endometriosis. Until much later.
We got married at 21 quickly had mackenzie at 22.
Back to the problems trying different birth controls getting sick. Drs basically thinking I am insane.
In this period of time I had several different drs. Due to practice changes so no one ever really got a full grasp of what I was dealing with.
Try to have Riley. After 9 months no baby. A new dr had me get an ultra sound and saw my ovaries were basically destroyed. I was 25. So I started clomid (fertility drug) after 3 rounds I was expecting. So to this day I am so thankful that I did not wait to have kids. Teenage pregnancy was an absolute blessing to me. I was told in one of the earlier ultra sounds of Riley that they were shocked I was able to have 3 babies.
Riley came at 26.
Pregnancies can at times help endo, with me that was not the case it just gradually got worse. They started me trying all kinds of new forms of birth control. Which would cause migraines until I would have to go to the hospital to get meds there to get them to go away.
The pain at this point was like a constant contraction. I wanted to rip peoples faces off pretty much all the time. I would have like 1 good week and 3 terrible ones. Nothing really helped but pain meds. And I can’t parent and be high all the time. So that was not even an option for me.
I had heard of getting an endometrial ablation. Where they burned out your uterus and that this could possibly help me. My dr told me i was too young and would not allow it.
Enter more birth control and bull shit.
FINALLY a new doctor joined the practice. He saw my history and agreed to do the ablation. Where i was also tested for endometriosis and had my tubes tied. Because an accidental pregnancy after this procedure could be deadly.
I was 28 when I finally knew what was wrong with me!!
Its like you can breathe a sigh of relief when you get a diagnose and realize that you weren’t crazy. That there was a real issue. I was however warned that due to my diagnosis what we did may not work but we had to try.
It didn’t btw. This is when I opted for the partial hysterectomy. My dr and I decided to keep the ovaries so I did not get thrown into an early menopause at the age of 29. So September 15 2014 I went in for the surgery. I was again warned that since I still had my ovaries I could possibly still have issues.
I had 6 months of feeling pretty decent. Then I started getting severe stabbing pains in the middle of the night that would wake me and I would basically hide and cry until the morning where I would pretend to be okay in front of my kids.
Here the endometriosis. Had created scar tissue in that region so when I ovulate it causes the pain. It took a decent amount of time to figure this out. We decided to try a pill form of medicated menopause. I cannot remember the name right this min.
The medicine took away the stabbing pain but added severe mood swings, hysterical Kala all the time… and hair loss. I was basically balding. Hahahaha sounds superficial but I just did not want to go there. I opted to try to stop this medicine. See if the problem would have been corrected from spending 6 months in treatment.
The pain came back. Along with my body going completely insane and thinking it was pregnant. Cravings, exhaustion, enlarged and painful boobs, nausea. Let me tell you mentally how fucked up that is. To feel like your pregnant when it is medically not even possible.
Plus its so frustration to be working your ass off and gaining weight for this “baby” that does not even exist.
Once that mishap went away. The endometriosis had spread to my bladder and kidneys. Causing severe back pain and blood in the urine. It took like several different doctors for me to figure this out. kidney specialists and urologist appointments. To finally go back to the gyno and him say it is the endo…
Fabulous.
Honestly I was just glad to know something was causing it. You start to think you are insane. New options. Medicated menopause with a new medication. Lupron, taken every 3 months with a max of a year. 12/15/17
I have some relief. But totally understand menopause now. LOL not fun. I feel like I am physically lit on fire several times a day. I can gain weight looking at pizza. Maintaining where I am at now, has become a full time job. But there is relief. Also my exercise has been keeping me from having to take another medication to prevent osteoporosis since weight baring exercise helps with bone strength so that is a plus!
When the medicine starts to wear off everything does come back. We were hoping it would shrink it I guess or cause it to go away somehow. And I took my last dose in Sept of 2017. So now we are slated to have a pre op appointment on December 1st 2017, to discuss removal of the ovaries.
Honestly I am just so ready to be done with it. So I will keep you all updated on how that all goes.
This is not my best writing, like I said I don’t like to relive all the pain and bull shit this has caused. I do have to say I am super blessed to have my girls, and my husband that has been dealing with all my crazy for so long.
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