My Story

I just discovered a blog wherein a fellow endo sister asked others to share their story. So I sent her my story, and then realised I really didn’t have a narrative of it here on my blog. So here is my story:

I got my first period at the age of 14 in 1985. By the time I was 15, I was vomiting from painful periods. Everybody told me I was being a baby about it. My mother threw Midol pills at me and told me to shut up. My friends did not have the pain as bad as I did, so I knew there was something wrong.

In 1991, I was put on Loestrin, firstly as a birth control method, and secondly with the potential benefit of easing my cramps. I went psychotic inside of 3 months, and stopped treatment. I wasn’t very good at recording details of my pain or treatments back then. All I have is the memory of wanting to kill everything in site, and weeping all the time, so I stopped Loestrin treatment.

In 1996, when I was 24 years old, I was fed up with people telling me that this pain was common to every woman, when I saw for myself that this was a damned lie. NOBODY around me was going through what I was going through, and I certainly wasn’t making this shit up. I hired a new gynaecologist – a man this time – and he told me I hit every symptom in the book for Endometriosis. He scheduled me for surgery, but my boyfriend got hired across country for a new job. I desperately wanted to go with him and leave the hometown we’d been trying to flee from for years. I promised the surgeon I’d schedule surgery as soon as I moved across country. How hard could it be? I’ve already got one doctor saying I likely have Endo. All I have to do is take that paperwork with me when I move, hire a new gynae and get the surgery.

THAT WAS A MISTAKE.

See, I knew nothing about health insurance in the United States. I had great Preferred Provider Organisation (PPO) coverage when I lived in Michigan. When I moved to California, suddenly the health insurance of choice for employers was Health Maintenance Organisation (HMO) coverage.
Under HMO insurance, it’s all about preventing illness, not treating existing illness. If you have existing issues, they don’t want to talk to you – they want to deflect you to other services. I spent the next ELEVEN YEARS begging doctors for surgery, only to be told I don’t have endo, I ONLY have Irritable Bowel Syndrome, or I ONLY have Dysmenorrhea, or I am simply out of shape and need to spend more time at the gym (I was bicycling 30-60 miles on average during this time, for fun!).
I was referred to chiropractic for period pain!! I was flagged as drug seeking for the pain!!

In 2001, I convinced my HMO primary care doctor to send me to a surgeon for evaluation with the suspected diagnosis of endometriosis. I was so excited to be so close to an official diagnosis. When I got to the surgeon, she flat out denied me surgery! She said I ONLY have Dysmenorrhea. She took a biopsy of my cervix, without any pain meds, knowing full well I’d driven there myself with no one to drive me home. I left her office feeling completely violated and abused. I noted the degree on her wall – University Of Alabama. I wondered if all doctors who trained in the South were this barbaric. She said my cervical biopsy came back normal. I fired her.

In 2005, I once again sought the help of a male gynae, hoping for a compassionate doctor such as the one I had back in 1996. Nothing could be further from the truth. This doctor looked me up and down with disdain as I told my story, and replied that I did not have endo – more likely it was bladder infections or sexually transmitted diseases! I noticed the degree on his wall – University of Kansas. Again, I wondered if all doctors trained in the South were specifically trained as barbarians. He was rude and condescending, but I let him perform a pap smear, hoping to exonerate myself. When the pap smear came back normal, and again he insisted I did not have endo, I fired him immediately.

Finally, in 2006, a friend referred me to her surgeon, and I had also finally scored a job which allowed me to have PPO health insurance. I saw the surgeon, told her my story, and she scheduled me for surgery. In February, 2007, I was laparoscopically diagnosed with Stage III Endometriosis on the ovaries, bladder, uterus and peritoneum. I was also told that I have a retroverted uterus and an everted cervix, which could account for Dysmenorrhea aside from the endometriosis. On that note, I was finally officially diagnosed with Dyspareunia. Why the hell wasn’t I told any of this when I had my cervix biopsy back in 2001?!?

I filed complaint against the surgeon who saw me in 2001, who had refused to give me surgery and who had said emphatically that I did not have endo. She was, coincidentally, a colleague in the same hospital as the surgeon who DID diagnose me with endo in 2007.
The hospital performed an investigation and came down unequivocal on her side, instead blaming my primary care doctor for improper referral, which had confused the surgeon, who did not know I was there for a surgery consult!! Are you kidding me?!?!

I experienced NO pain relief from the surgery. Initially, I was put on Yasmin to suppress the ovaries after surgery, but within one month, I exhibited the terrifying symptoms of Akathisia and Anhedonia (I just learned of the term Anhedonia from another fellow endo sister’s blog post, entitled Progesterone intolerance: Loss of enjoyment).

Two months into the Yasmin treatment, I was completely suicidal and had to be placed on 72-hour lockup while the doctor stopped the Yasmin treatment and fed me full of Xanax around the clock.
After that mess, I found that I did experience longer amounts of time between endo flares, where I was more often pain-free and had more energy. Each menstrual cycle however was the same as it had always been – I was bedridden from the pain. Six months post-op, sobbing in the surgeon’s office, she admitted to me that she had not gotten all of the endo out of me – that there was a spot on the bladder reflection – she was too afraid to get to it, because she feared she would have ruptured my bladder.

I knew this meant I’d have another surgery.
Three years later, in 2010, I had my second laparoscopy, and was re-diagnosed with Stage I Endometriosis. Again, my uterus and ovaries were covered with endo, and now endometriomas in the ovaries as well. There was a complication during surgery – they accidentally ran into the mesentery
The second surgery showed better results, but I have never been completely pain-free during my cycle. I may have spent far less time bedridden in 2011, but I still experience level 6 and 7 cramps, and I still have to come home sick from work. On the upside, I experienced 20 consecutive pain-free days in a row after this past surgery. It was amazing.
Of course, 14 months post-op, the endo symptoms are returning again. I have decided against further surgery, since I’m in the home stretch for menopause, which should begin anywhere in the next 6 to 10 years. That seems like a long time, but when surgery has been an ineffective pain management tool for me, and I’ve already been suffering with endometriosis for 26 years, I choose my battles carefully. I know the behaviour of the endo in my body. I have figured out my windows of uptime. I’m tired of hormonal and surgical experiments to quell the pain, which only brings up new and more terrifying complications.

I am fully aware that endometriosis could continue to ravage me despite entering menopause. If that becomes the case, I may go in for the big surgery – hysterectomy. Unfortunately, since the endo attacks my ovaries, I’d have to lose them, which means being put on HRT. If there’s ANY endo left in my body after a hysterectomy, then the HRT could stir up a new hornet’s nest, because endo feeds on any estrogen – whether natural or synthetic. There’s also the issue of progestin intolerance, which I am convinced was the case in leading me to become completely mental when I was on Loestrin and Yasmin. So far, I have refused any other hormonal treatments. No Lupron, no Danazol, no GnRH treatments of any sort – none of it. I refuse. I would rather have pain every 25 days for up to 4 days than ever deal with Akathisia, Anhedonia and planning suicide again.

For further information, see Things I’ve Tried To Combat Endo.

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