I will give you all the background story leading up to today and why I am finally asking for some help.
In mid 2017 I started experiencing crippling pelvic pain, pain that makes you throw up and pass out and the pain comes on without much warning. I had no idea what was causing it so I ended up going to the Emergency department multiple times hoping they could help but all the tests came back negative and nothing showed up on MRI's, CT scans, blood test, X-rays and Ultrasounds, you name it I had it all. So I was sent home on multiple occasions from the emergency department as "nothing was wrong with me" and that I just had to manage the pain with painkillers but I kept ending up back in emergency in incredible pain.
I needed answers and a proper diagnosis and treatment and the only choice left was to see an OBGYN and get a specialists opinion. Following the consultation they concluded that I needed to have an operation to see what was going on, so in October 2017 I had my first surgery.
During that surgery they found the answer, Endometriosis...
Whats Endometriosis you ask...Endometriosis is when the tissue that makes up the uterine lining (the lining of the womb) is present on other organs inside your body. Endometriosis is usually found in the lower abdomen, or pelvis, but can appear anywhere in the body. Women with endometriosis often have severe lower abdominal pain, pain with periods, or pain with sexual intercourse, and may report having a hard time getting pregnant.
Fast forward a few more months and the pain began to come back, this time more intense than last so I followed up with who we thought was specialist for Endometriosis this time, who performed surgery number 2 in June 2018. It came as a such a shock to us when my surgeon said he found nothing and my pain was all in my head, he went as far as to say that I should go on antidepressants. We were devastated, we never expected such a cold response from a doctor and it was hard to accept seeing I was still in crippling pain.
While I was debating this with my surgeon I started having bladder issues as well. It got so bad that in the space of one week I had 5 catheters inserted. I was retaining over a 1L of fluid and becoming dangerously close to causing lasting damage to my bladder. My surgeons response to this when I asked for help was "25 year old women don't get retention after surgery", he said that I was subconsciously holding it in because of anxiety. I could not believe what I was hearing and neither could the Urologist who I had to see in the end to help the issue.
Once the bladder issues resolved enough for me to be comfortable I decided seek advice from others in similar situations and to find another specialist, one who was renowned for fighting Endometriosis and that wouldn't tell me it was all in my head. I had already had 2 months off work because of the pain by this point and the pain pills I was on such as, targin, endone, oxycodine, tramadol because my work couldn't allow me to work while taking strong medication.
8 weeks after my second surgery, I had yet again another surgery and nothing prepared me for what was found. This time around my surgeon did a exploratory surgery to cover all the bases and make sure we got the right answer.
During the 2hr+ surgery he found:
- Right ovary attached and fused to my uterus wall with Endometriosis
- Hand size adhesion found and removed from the back near my bowel
- Start of Endometriosis on my bladder
- Endometriosis on my bowel
- Small Adhesions around previous operation sites
- Adenomyosis diagnosed (Endometriosis's sister, it grows in the muscles) found in my uterus wall
All this in just 8 weeks from my last surgery with a surgeon who told me my pain was all in my head!
At the moment I am still trying to solve my issues with the different treatments my doctor is giving me but I'm racking up an enormous medical bill that's already above $10,000! I still have more expensive medication and testing to come including having to see a allergy specialist because I had an allergic reaction to one of the main pills my doctor wants to put me to put me though sudo-menopause. I've also been instructed to start doing Hydrotherapy to help strengthen my core muscles and restore my stamina. I will more than likely need another surgery in the future but my doctor and I doing everything we can to prevent that.
I'm still unable to work as I'm on strong hormonal medications to help deal with the Adenomyosis and Endometriosis and it affects me to the point where I can't drive or walk long distances. Not to mention the pain medications I still need make me nauseas most of the time, it can take the body 6 months to get used to this type of hormone medication.
I need some help from some amazing people out there, anything given will help take some pressure off until I can get back on my feet and get back to work.
Thank you all who do help, anything makes a difference.
If somehow we receive more than we need to cover bills, anything left over will be donated to the QENDO foundation or to other like myself.