I Will Not Suffer In Silence

As of November 2010, I have seen 19 doctors in 9 years in an effort to help treat the pain of endometriosis. The high turnover is common with endometriosis patients, because doctors think we are drug seeking, or they don’t believe our pain, or they misdiagnose us, or they present a type of treatment we feel is wrong for us.

My body belongs to me, and no matter how well educated a doctor or specialist is, they are ultimately NOT ME, and so the final decision of the best course of treatment rests with ME, NOT THE DOCTOR. I’m the one who has to live in this meat sack with any side effects from medications and surgeries, not the doctor.

Once humanity gets this through their skulls, maybe we endometriosis patients will be treated with a little more respect and dignity.

Doctors and specialists I have seen to treat the pain:

Karen Peters, ND @ Harborside Health Center, Oakland for pain management. First visit in November, 2010. Will see how it goes.

Alan Bolton @ Harborside Health Center, Oakland – Alexander Technique for pain management. I have been seeing him a few times a month – I go when my body permits movement – and I have faith in the teaching of this technique. I recommend Mr. Bolton!

Dr. Linda Giudice – reproductive endocrinology GYN – April 2010 – present. So far, she is FANTASTIC! Scheduled for surgery with her in December, 2010. One of my friends also sees Dr. Giudice, and has in the past recommended I check her out. I didn’t follow through fast enough because I was stubborn and wanted a GYN in the East Bay, instead of having to travel across the Bay to San Francisco. Stupid me!

Dr. April Fredian @ Bayside Medical Group, Alameda – primary care – January 2010 – present. I left Alameda Family Physicians because I do not feel I’ve gotten the dedication I need for my illness management. Dr. Fredian said she was up for the challenge, and so far has delivered on her promise to care for me as a high risk patient (autoimmune disease in general means someone like me is more often in the doctor’s office). Five stars to this doctor!

Dr. Roger Stephen Ellis @ 450 Sutter Street, San Francisco – January 2010 – present. Okay, I know his website is horribly, horribly laid out. But my husband’s friend referred me to Dr. Ellis on January 16, 2010 as we both sat talking about our pain issues at a mutual friend’s birthday gathering. She swears by this doctor, who advocates for medical marijuana patients. She says he’s the only doctor the California Medical Board certifies as above-board with his paperwork and patients. I guess this is supposed to make me feel like the local police and the federal Drug Enforcement Administration (DEA) would leave me alone if I started using marijuana. Anyway, a week later, on January 23, I had an appointment with Dr. Ellis. He took one look at my surgery report, diagnosed and wrote me a prescription for medical marijuana, good for six months. I have to provide ongoing documentation which states I still suffer from the pain. Six months later, I re-upped as a year-to-year patient.

It’s one more thing I can now say I have officially tried, on the record. Sadly, it did not work for my chronic pain. I have in the past self-medicated with marijuana during my period, and both times, the cramps got worse until I was crying in agony. The first self-medication was sometime in 1997 or 1998 with street-bought pot. The second self-medication was in 2005 with medical-grade pot that a friend had. Both times, I smoked it. When I tried medical marijuana in 2010 with my prescription from Dr. Ellis, I once again had negative side effects. I tried smoking it, eating it, drinking it (specially prepared mocha mix!) and taking it in pill form, and all made my cramps worse, and ultimately unfortunately led to a psychotic break at the end of July, 2010. Me and psychoactive drugs just don’t get along.

Someone told me back on January 24 that marijuana use elevates estrogen levels in the body. Endometriosis feeds off of estrogen, so that could be why my pain got worse. In April 2010, I found a small study showing that while THC helped pain in cancer patients, it antagonised or further worsened reproductive pain. So it’s not like I didn’t go into this blindly. I had my own prior experience, plus knowledge of a small study, but I still wanted to go on the record as officially having tried the prescription medical marijuana route.

It’s not all bad, though – I renewed my prescription through Dr. Ellis because the prescription also allows me access to free services through the pot dispensaries – services such as acupuncture, naturopathy, massage, psychological help, and pain management courses.

Dr. David Adamson – I did not actually SEE this doctor. I phoned the office and was told “Dr. Adamson is no longer seeing patients with endometriosis – he only sees patients with endometriosis who are trying to have children.” OUCH!!! Stab me in the heart and punish me for not wanting children!

Dr. Andrew Cook – I did not actually SEE this doctor. I phoned the office – they don’t DO insurance – they want prompt payment from my bank account or credit card. But they are happy to submit a claim to my insurance company on my behalf for the rest of the money to maybe be returned to me.
From their website, “We believe in health maintenance rather than just control of disease. This type of care is not accommodated in the billing contracts of insurance companies that require a rushed schedule. For this reason, Vital Health does not contract with insurance companies. Vital Health Institute specializes in excellence!”
The first visit is a $200 consultation fee, and if my insurance deductible has not been met, then it will be an additional $395 for the office visit. That’s a total of $595 out of pocket for a single office visit. Then there’s the idea of surgery with this guy, also out of pocket. My first laparoscopy was $19,000 and was covered in large part by Blue Shield, our old insurance plan. My out of pocket cost on that was $1,500. To do the entire surgery out of pocket? Ouch.

Dr. Henry (Hank) Streitfeld @ Sutter East Bay Medical, Berkeley – January 2010. Referred by two co-workers; one of whom has endometriosis and sought treatment by him. She ended up getting a hysto, but still encouraged me to see him. He was every bit the spry, humourous and no-bullshit doctor my co-workers said he would be, but he could not help me. He is a proponent of Lupron, to my dismay. After listening to my history, he agreed that I am in the rare category of patients who cannot have hormonal treatment, and even suggested I might have adenomyosis. He encouraged me to keep on my current plan of finding a surgeon who will do laparoscopic excision surgery instead of laparoscopic cauterisation surgery (the latter being what I had the first time around). He referred me to two doctors about 45 miles south of where I live (Dr. Andrew Cook and Dr. David Adamson).

Denise Cicuto @ Back To Life Wellness Center, Alameda – acupuncturist – December 2009 – July 2010. Referred by my friend Miska. Also took two kinds of herbal pills, but had allergic reactions to them, as well as to prepared teas made for me. Husband didn’t believe the acupuncture was working for me, so was reluctant to help me pay for it. Had to stop treatment until I can afford it on my own.

Dr. Kate O’Hanlan @ Gynecologic Oncology Associates – August 2009. Dr. O’Hanlan insisted upon a total abdominal hysterectomy and HRT until past age 70, based upon my case history. She also wanted me to get the CA-125 cancer screening, despite the fact that Dr. Lisa Bernard-Pearl AND Alameda Family Physicians doctors tell me repeatedly NOT to get that test, because patients with endo always get false positive on that test, since endo is cancer-like. Dr. O’Hanlan was brusque, egotistical, and emphatic that my only option is total abdominal hysterectomy. Refused to see her for a second visit. Dr. Bernard-Pearl apologised to me, said she only wanted me to see Dr. O’Hanlan for excision laparoscopy, and does NOT recommend hysto for me, since endo is also on/near the bladder. The pain will therefore continue post op once the Hormone Replacement Therapy (HRT) starts. Bugger the fact that hormones have proven to make me clinically insane and suicidal the two times in 20 years I had tried them.

Dr. Lisa Bernard-Pearl @ Sutter East Bay Medical, Berkeley – January 2009? Tylenol 3 continues to be prescribed.
January 2008 – high liver enzymes – this sets off a search for a new pain med:
Codeine Sulfate – Feb, 2008
Hydromorphone (Dilaudid) – Mar, 2008
April 2008 – liver enzymes stable but Doc still wants me off Tylenol 3
Tylenol 3 and Motrin – May 2008 – Sep, 2009
Referred to Kate O’Hanlan – Aug, 2009
Vicoprofen – Sep, 2009
Tylenol 3 – Nov 2009 – Dec 2009 with ultimatum to get a pain management doc because Dr. Bernard-Pearl no longer wants me on Tylenol 3.

In January 2009 I got a referral from Alameda Family Physicians to see a Dr. Grace Eng – endocrinologist – but for some reason the appointment never happened. I tried in April 2009 to see a Dr. Elaine Wong – endocrinologist – but for some reason *that* appointment never happened. In 2010 I must see an endocrinologist – I was told in late 2008 by women on the endometriosis forums that gynecological endocrinology is the best way to go for endometriosis patients.

Christine Ciavarella @ Hahnemann Medical Clinic for homeopathy – December 2008. I saw her two times (Dec 2008 and Jan 2009; one complete menstrual cycle) before deciding that the sepia pills she prescribed might not be useful for my condition. Costs $$$.

Dr. Claudia Mansbach – Chi Nei Tsang and Qigong specialist – 2008. Saw her a few times but she seems flakey with regards to regular Qigong classes. I was interested in seeing her again for Chi Nei Tsang and regular Liver/Gallbladder Cleanses, but it costs $$$. Then I found out the following and fired her.

Dr. Beng Yan – acupuncturist – 2007 – 2008. Also took Chinese herbal pills. Did not feel treatment was helping me, and he did not strive for each next appointment, so I stopped going.

Dr. Nancy Shaw @ Alameda Family Physicians – November 2006 – December 2009 – primary care.
In October 2007 I got tired of being routed to any doctor who was available on staff; I wanted a primary doctor. I nominated a new doctor named Mary Fisher, who didn’t fit the bill. I went back to being routed through any doctor available whenever I needed to be seen, and then in January 2009 I decided to appoint Dr. William Sellman. He also did not fit the bill, and once again I went back to seeing any doctor available, and made up my mind to leave Alameda Family Physicians.

Dr. Marilyn Milkman @ BaySpring Medical Group – March 2006, GYN, March 2006. Referred by my friend Patricia Roberts. Dr. Milkman saw me a few times and decided I was a good candidate for laparoscopic surgery. Was willing to continue prescribing Tylenol 3 for the pain.
The surgery was performed on 2/1/2007. Diagnosis: stage III endometriosis on both ovaries, back of uterus and on bladder reflection. She cauterised what she could – did not excise – afraid of rupturing my bladder. No pain relief from surgery.

Dr. Wendy White @ Lifelong Medical Care in Oakland, primary care, 2005. Sent me for pelvic and abdominal ultrasound due to lower left flank pain. Ovarian cyst found. Started off in June 2005 helping me w/ endo pain, but by August was referring me elsewhere, saying I likely had IBS, not endo, and was also pushing IUD and exercise to stop the pain. Still taking Tylenol 3 and Ibuprofen 600mg, depending on what doctors would allow the T3 prescription.

Dr. Kent Farney – GYN – 6/14/05 – condescending, rude, insisted I must have STD or recurring UTI – totally judged me on appearance. Pap smear normal. Fired him immediately.

Dr. Susan Wilturner, primary care, 2003. Saw her for upper back pain (my back was going out a lot during that time, due to job and financial stress). Was on Soma, Tylenol 3 for back pain, and on Naproxen 500mg for endo pain. I realised in 2003 that the Tylenol 3 was more effective in treating the endo pain than the Naproxen was, and began requesting it specifically for endo.
In 2005, I was referred to Dr. Kent Farney for pap/endo stuff.

Dr. Sharon Knight @ UCSF, 2001. She refused to do a lap for endo, did cervical biopsy and pap in 2001 – both normal. She was condescending. I cried when she would not hear me out. She offered no anesthesia or pain medication for the biopsy, which left me dizzy, nauseated, bleeding and cramping – I had to drive home in that condition.

Dr. Norma Espinoza @ Bay Area Family Physicians in California, primary care, two abnormal paps in 2001, referred to Dr. Sharon Knight, GYN. Dr. Espinoza said this GYN would be able to do surgery to diagnose me officially w/ endo.

Dr. Robert Dock, Dr. Francis Darling, or Dr. Michael Kent @ Professional OB/GYN Associates in Michigan – saw me on 4/17/97 and said that I “hit every symptom in the book” for a condition called ‘endometriosis’, and scheduled me for surgery. I had to postpone surgery as I found out in mid May 1997 that we’d be moving to California.