Endometriosis story


  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.





Endometriosis - When will they find a cure?

by Alyssa P.
(Philadelphia, PA )

Hello, I suffered from terrible periods as a teenager, and was not diagnosed with Endometriosis until I was 19 - I am now 26 years old.


The sad part is, I was told for YEARS that I just had "bad periods", and they would prescribe me some 800mg Motrin or something like that to help control the pain. I was the one who took the initiative and said, "you know what? This is NOT normal.... there has to be something else going on".


And low and behold - I had my first laparoscopy at 19 and they found Endometriosis... I also have something called "Allen-Masters Syndrome", which is a defect in the uterosacral ligaments (I have a tilted uterus).


But anyway, it's been nothing but crap since my diagnosis. I had a second laparoscopy in June of 2013 'cause my pain was getting worse again, and they discovered Endometriosis on my bowels, bladder, and even adhered to my Appendectomy Scar (I had my appendix removed in February 2013).


My doctor currently has me on Depo-Provera to try and control the pain... he wants another surgery to be the last option. I had terrible bleeding for the first week or so and then it went away, but I don't know... I haven't noticed a different pain wise.


If anything it's gotten a little worse. He keeps bringing up Lupron... but I REFUSE to do it. My mother also has Endometriosis, and she had TERRIBLE side effects from Lupron, so I'm afraid I will experience the same thing.


Countless Doctors visits, ER visits, physical therapy, pain medications, and birth controls and ensued since my diagnosis, and it affects my life in a way that I feel is out-of-control most times. I started seeing a therapist 'cause I started to suffer from depression, but therapy has helped a lot with my mental status through all of this.


I know there are a TON of options out there, but I feel like all I do is manage my pain and that's it. Doctors are not well-educated on this disease, and a good doctor is hard to find. There really needs to be more awareness!


Awareness and Education is the key to our success as Endometriosis Patients. So please, do whatever you can to spread the word! I know it's ridiculously hard, but there WILL be a path for us soon!


Keep your heads up, ladies :)

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