These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
by Meghan
(Rhode Island)
Since the age of 14 I have always had severe cramping and heavy cycles. Lasting anywhere from 7 to 13 days. Being unable to move or function and being in writhing pain every second of it.
I was told this would be my life because I have Von-Willerbrandes Disease, which is when you don't have a clotting factor in your blood. Looking back I don't know what that has to do with such debilitating pain, but I'm not a doctor.
I have been on many different birth controls that never helped. Even off of it for a few years which I could get a period every 2 or 3 weeks and last just as long. And the pain was always severe.
In 2011 I went and they found cancerous cells in my cervix. After multiple treatments and biopsies and procedures they said I was normal.
The past 3 years I have felt more and more pains. First it started with a pain, almost like a band, across my upper abdomen that would wake me screaming at night. I felt as though I was going to die. That something was going to rip my insides apart. Was told to go see a GI.
Along with that came the feelings of being bloated constantly. Mass amounts of fatigue, then the pelvic pains started. Mostly my right side. I could only explain it as ovulation pain but that shouldn't have been the case because 2 years ago they put me on the highest level of estrogen and I shouldn't be ovulating. The pain could go from there...to vaginal area..to rectum area...tailbone always effected..in front of my pubic area.
GI ran a colonoscopy and endoscopy and all was normal. And I got to hear again, 'if no doctors continue to find nothing wrong, maybe you should believe it to'.
I am done and exhausted if I'm not in acute pain I am always, always in discomfort. My gyn finally 3 months ago, put me on a constant cycle of my birth control to skip placebo pills in order for the pain to stop. And it hasn't, at all. this week I have left my house maybe for 2 hours a day. Today I haven't left at all.
I am depressed and going crazy I want the pains to stop. I finally was able to talk my doctor into getting the ball rolling for me to get a laparoscopic surgery. I cough all of the time and I wake up coughing most nights. Like a cough attack as if I have something tickling my throat.
I have constant phlegm and recently was told my severe chest pains I get on and off was simply an inflammation in my ribs.
My biggest fear is going through this surgery and hearing nothing is wrong like they have always said. After the GI procedures...5 ultrasounds, going to the ER due to pain for another ultrasound, I'm tired of hearing nothing is wrong or to eat more fiber. I'm horrifically constipated which is the polar opposite of me my whole life.
If anyone can relate to any of these please let me know. I don't know how else to talk about this without people being tired of hearing it or thinking I'm crazy. But its just so hard to live with all this and no answers all of the time.