These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
Emotional and physical wreck
My names Heidi and I would like to share my personal endometriosis story.
I was 11 when I started my period, I am 25 now and just diagnosed with endometriosis 4 days ago. I always had extremely painful periods from the start, as the years went on they got worse and worse to the point I became paralysed from the pain and missed many school and work days.
When I was 12 I first went to my doctor who diagnosed me with painful heavy periods and started me on my first round of birth control which I would take for the next 7 yrs. The birth control "helped", still had severe cramping but my periods were shorter.
Throughout the years I have been on 8 different kinds of the pill for treatment, all of which had their own symptoms I hated. I decided to stop them when I was 19 as I wanted to try and have a baby with my fiancée at the time. Tried for 3 years and nothing.
With every cycle my symptoms got worse and worse but every time I went to my doctor she would act like it was all in my head and tell me the only thing she can do for me was more bcp, which I refused to take any more, all I wanted was a baby.
So she give me anti inflammatory drugs for the pain which I became immune to, and any painkiller she could prescribe to me. So once again I was left alone to deal with it.
None of my friends even understood what pain and agony I went through everyday. It was when I was 21 I went back to my doctor again because sex became even more painful and I had collapsed the night before because of it.
So she sent me for blood work and an ultrasound, it was then we found out my hormones were outta whack and I had ovarian cysts. So this was the start of the so called diagnosis. I also had poly cystic ovarian syndrome and once again was put on bcp, which I ended up having a severe reaction to.
They were afraid I was going to have a stroke, the pill had caused my blood pressure to sky-rocket and I was having migraines everyday, so I was quickly taken off it and told there was nothing she could do for me at that point.
So I was left to suffer with the physical and mental strain that this disease had caused. I've had ultrasounds about 20 times since that first one and each one showed I had ovarian cysts and free fluid from old ones rupturing.
So we know I have frequent cysts. It was May 2012 the pain became too much to deal with again, so I once again went back to my doctor, and this time she sent me to a gyno because she had nothing left for me.
Went to this gyno June 2012 and had a mirena iud inserted (I have no kids so that right there is usually a no no but since I can't take the pill it was my only other option). The next 6 months of my life were hell everyday. It felt like the mirena was piercing through my uterus and I bled for 5.5mths out of the 6 I had it in.
I haemorrhaged right before I had it taken out, ended up in emergency where my blood count was so low they said it needed to come out. So I had to see my gyno the next day to have it removed. It was there she had to put me on the pill again because she wanted the bleeding to stop.
I lasted 3 weeks of that and had the same severe reaction from before. So I was left alone at this point to deal with "pcos" because they had no options left for me. After the mirena was taken out my periods became "normal" for 2 months but the pain intensified and with every cycle after got worse.
It got to the point my cycle went from 28 days to 20 days. It dropped every cycle which had me emotionally 'not there'. I felt like I was on it more then I was off because my periods were usually 7 or 8 days long.
The cramping ended up radiating up and down and side to side in my back, across my lower belly, through my pelvis and down my legs. I had always had painful urination and bowel movements but the last few mths it got worse. Constant pressure and burning when I peed and when I tried to move my bowels.
It always felt like my ovaries were going to explode. It was the end of may 2013 I knew something was seriously wrong with me and I wasn't going to take no for an answer any more and be made out to be faking no more.
Went back to my doctor again, this time for the last time, I told her I was at my wits end with the pain. This is where she told me she was 95% sure she misdiagnosed me with pcos and that I've had endometriosis this whole time.
So I was sent back to the gyno week later. She scheduled my laparoscopy for july 5th. I went in for it and sure enough they were right. I have endometriosis she cauterized it away. I see her in 4 weeks to talk about my options because I can't take the pill to slow down the progression.
I'm iffy on the progesterone injection because a girl I know had endometriosis and was on the injection for 3 yrs and it developed into uterine cancer. She had a full hysterectomy at age 28 and they then told her the injection caused it because she wasn't having a period so the white blood cells tried to attack her uterus because they thought it was an infection which then turned to cancer.
And endometriosis runs in my family and my aunt had a hysterectomy at 32 because it was cancer so I'm to freaked out. So I guess my option is the surgery every time it returns. This diagnosis has turned my life upside down.
I'm emotionally and physically torn apart. All I want is a baby and clearly that one is never going to happen. Tried for 5 years and nothing and now I know I have endometriosis I understand why. The one thing they did say is I have a 1% chance of having a baby if I do ivf.
Because I have endometriosis and the re-occurring ovarian cysts and if I were to ever get pregnant on my own it would be a miracle. I keep telling myself I need to not listen to them when it comes to babies but after 5 yrs of trying its so hard to not believe them.
I can't afford IVF so I'm going to just have to hope I get my miracle one day. Seeing everyone's stories actually scares the bejesus out of me because I really don't know what is going to happen to me. I really would like to hope the endometriosis will stay away, but I also know that really isn't an option, because it will always return just a matter of when :(. Well thanks to everyone who reads my story. Sorry for the long one. Have a good day and all we got to do is pray for a cure for all of us :).
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