|My Endo Journal|
March – April 1998
Dr. Betty Lee’s office in Beverly Hills California
Receptionist/Appointment maker refused to make an appointment for Depo shot. I’m due on March 31 for a shot.
Dr. Robert Waldman’s Office in Marina Del Rey California
Can’t get through to doctor, only secretary. Says I don’t need a referral for continuing treatment, especially for Hormone Treatment.
I gave up after the third round. I can’t speak to the actual doctors, and the secretaries are so inefficient that if this were a real business these doctor’s would be bankrupt. No body knows anything about nothing at these offices. Dr. Waldman’s office is the worst. You get your ignorance served with plenty of attitude. Dr. Lee’s secretary just disconnects the phone if the questions get too hard.
Dr. Robert Waldman’s Office in Marina Del Rey California
Went to see Waldman about an acne rash on my face. I’ve been off Depo Provera now for 5 months, the doctor is non-pulsed by this information. I ask him for a referral to a Gynecologist without Obstetrics. He tells me to give Dr. Lee another try.
I call Dr/ Lee’s office again. The receptionist will not allow me to make an appointment without the referral number.
I call Dr. Waldman’s office and his secretary tells me I don’t need a referral. I can see very clearly where this is going. I give up after the second try.
Century Plaza Hotel, Century City
Attended Endometriosis seminar with Dr. Mark Surrey, Reproductive Surgery Associates. Very informative. Lights the fire under my ass to finally do something about my health.
11/10 – Fax letter requesting treatment to Dr. Waldman.
11/11 – During a phone consultation, Waldman says he can’t help me with the request for treatment of Endometriosis. He tells me I will have to pursue treatment on my own. The conversation was rushed and I assumed he meant that I would have to research the doctors/treatment plans on my own and he would provide referrals.
He referred me to Dr. Carter Conwell, even though I specifically asked for a Gyn without Obstetrics. Both he and his staff first tell me I am required to see an OB, then they change and say a Gyn and an OB are the same thing. I call Conwell’s office to make an appointment. The receptionist tells me he has “several” Endometriosis cases, but can’t give me the exact number. She squeezes me in on 11/19.
11/13 – Menses starts with incredible pain. Cal Dr. Waldman’s office for help with the pain. After fighting with the secretary for 3 phone calls, Waldman finally calls me back and prescribes vicodine.
11/16 – Contact Health Source Medical Group (HMO) to follow up on Gyn referral, no referral is found. Contact Waldman’s office staff, they swear they sent the referral on 11/11.
11/17 – Contact Health Source and referral is approved for Conwell.
11/19 – Attend appointment with Dr. Carter Conwell. He has quite a few cases of Endometriosis and he treats all of them with Lupron. He used words like “cancer” and “colostomy” and “removal of intestinal tissue”. I was in so much pain, I couldn’t stop crying. We discussed Lupron, and I thought I made it very clear that I needed more research studies on multiple Lupron treatments per lifetime. Conwell had no specific information and waved away my concerns with hand gestures. After an exam and blood test he prescribes Diflucan (yeast infection), Sulfa (urinary tract infection) and vicodine (Endo pain). He tells me to contact the office in approximately 3 days.
11/23 – To my shock, a referral for 3 months of Lupron therapy arrives in the mail. Considering I told Conwell I needed more information on multiple treatments of Lupron before I could consent to treatment, I was stunned to find that he discounted my input.
I NEVER AGREED TO USE LUPRON IN NOVEMBER 1998!
12/4 – (Friday) Mid-day I began bleeding and have severe pain mid-cycle – go to Huntington Memorial ER at 11pm. After exam, ER doc sends me home with more vicodine.
12/8 – (Tuesday) Woke up with cramps. Discovered rectal bleeding around 11am- go to Cedars-Sinai ER at 11am.
Dr. Carter Conwell is contacted by telephone by the ER doctor, Dr. Frankel.
Conwell begins the phone conversation by asking what the trouble is. As I begin to tell him what’s happening, he interrupts me and says he was disappointed to hear from his nurse that I am reluctant to start the Lupron treatment. I asked him how the Lupron would affect the rectal bleeding. He response:
“We are running into complications here… If you won’t agree to the Lupron, there’s nothing more I have to offer you” and hangs up the phone.
I am now without a private doctor, having been denied and dumped by Dr. Carter Conwell, while still awaiting treatment for rectal bleeding in the ER. The ER doctor (who admits he has absolutely no idea how to treat Endo) examines me and reports that I have a small rectal fissure. I ask him if it’s normal for clots to pass through a fissure. He gives me a perplexed look and says “sometimes”.
12/9 – 1/9
For the next month I argue continually over access to a Gynecologist without OB with Dr. Waldman’s staff (there are 2 of them now). The HMO says I am entitled, especially with surgically diagnosed Endometriosis, Waldman still says no, but won’t explain further. I never get to speak with him the entire month. All information comes 2nd and 3rd hand from his staff.
I find Dr. Eric Surry (brother and partner Dr. Mark Surrey) through Centerwatch, and confirm with the HMO that Dr. Eric Surrey is contracted with my plan and I have authorization to see him.
Waldman’s staff tells me my referral request is denied because Dr. Surrey “isn’t in our book”.
I ask both the HMO and Waldman’s staff why they have 2 different specialist books. Waldman’s staff takes this personally and begins systematically denying all requests from both Michael and myself. Mike ends up going to see Waldman personally during a previously scheduled appointment and talks to Waldman personally. This fixes Mike’s treatment problems but not mine.
12/28 – The HMO calls Waldman’s staff directly to obtain the referral to Dr. Eric Surry Gyn without Obstetrics.
Waldman’s staff says she can’t send the referral because Dr. Surrey is not on her approved list. The HMO representative explains that her list is 3 months out of date and Dr. Surry is under contract on my plan. The admin says she is faxing the referral directly to the HMO for immediate approval. Heather is waiting to enter it into the HMO referral system that very same day. It is never received.
12/29 – Contact Waldman’s staff to determine disposition of referral to Dr. Surrey. She says she mailed it 2 days ago on the 27th.
12/31 – Menstrual cramps are unbearable and I have 1 Vicodine left. I have four days of pain and one Vicodine! Mike pages Waldman on the emergency line. He tells Waldman there are only 2 choices, Mike drives me to the ER to get Morphine and a Vicodine prescription, OR Waldman calls a 24-hour pharmacy so Mike can get the RX filled. Waldman opts for the 24-hour pharmacy.
1/4 – I attend appointment with Dr. Eric Surrey. Before I left for the appointment, I called the HMO to find out the disposition of the referral. Nothing is in the system. I ask the HMO how that affects my situation since I requested the referral from my PCP (Waldman) over 3 weeks ago. The HMO tells me to attend the appointment and have the billing clerk contact the HMO for payment.
I contact Dr. Waldman’s office to relay Dr. Surrey’s treatment plan. I ask for a Bone Scan (to measure bone loss after Lupron) and a referral to a Gastrointerologist. Waldman in the back ground tells the admin that I do not meet the criteria for care and denies the referrals on the spot. I hang up in frustration
1/5 – Dr Surrey’s office calls to say they still have not received a referral for the initial visit. I contact Waldman about Dr. Surrey’s treatment plan. I require a Gastro referral and Dexa-Scan. He has his admin tell me I do not meet criteria of care, again, for Dexa-Scan and she says he refuses to submit referral for Gastro on the basis of “it’s not my job”. He has his admin tell me that Dr. Surrey’s office should write the referrals.
I ask him where the referral is for the initial visit and he blames the HMO for losing my paper work. He nor his staff have any idea that I am in constant contact with the HMO on a daily basis. (I caught both him and his staff in a bold faced lie!)
1/6 – Contact HMO to find out how soon I can change PCP’s. I interview Dr. Arthur Lipper (referred to me by Dr. Eric Surrey) as a potential doctor. He is familiar with Dr. Surrey’s work.
Send letters to Dr. Robert Waldman requesting all medical records be transferred by 2/1/99.
1/9 – Health Source gives me a courtesy call to inform me my referral to Surrey has been approved and I can make the appointment at my convenience (the appt was on 1/4!)
I call Heather at Health Source Medical Group and have her check the dates on everything. The referral was received by fax at the HMO on 1/7 and approved on 1/9. A mailed copy was never received.
1/15 – Received denial letter from HMO to a Dr. Ellis (I find out later he’s a GI). No information on referring doctor.
1/25 – Contact HMO to follow up on Dexa-Scan and Gastro.
The GI has been approved, but he is not accepting new patients. The HMO gives me 4 GI numbers. I have to contact all 4 GI’s before I find one available before April 1, 1999.
Dr. Graham Woolf agrees to see me on February 2, 1999.
2/4 – Attend appointment with Dr. Graham Woolf.
He looks over the Herbals I’ve been taking and tells me to stop the Valerian and Dong Quai. The rest are vitamin supplements and are ok. He schedules a Colonoscopy.
2/9 – Colonoscopy Procedure – procedure fails due to tissue outside the colon constricting the inside causing an obstruction. A Barium Enema is suggested, but surgery is inevitable and should be scheduled ASAP.
2/10 – Dexa-Scan
2/11 – Dr. Woolf calls to explain the results of the Colonoscopy. I tell him it’s been 2 days since my last bowel movement, is this normal? He tells me that I need to start taking Dulcolax each night before bed, and use a stool softener throughout the day. I ask him about how long I should expect to use the laxatives. He stops and says:
“Onagh, listen to me very carefully, I am not trying to scare you, but you will need to do this until you have surgery to remove the obstruction. You need to stick to a Low residue diet if you start to experience more pain.”
I am absolutely freaked out – AND I’M AT WORK!
2/16 – The appointment with New PCP Dr. Arthur Lipper goes extremely well. He bumps my Friday (2/19) appointment with Dr. surrey up to that afternoon.
A barium Enema is scheduled for 7am Friday morning.
2/17 – Receive phone call from Dr. Surrey’s office:
Was I aware that Health Source had denied my access to Dr. surrey?
Contact Dr. Lipper, leave message.
Lipper’s office calls back: they are working on the problem, but please make sure I attend the barium enema procedure in the AM as it’s very important.
2/19 – Barium enema
Dr Lipper and I discuss surgeons, I choose Dr. Ronald Leuchter, gynecological Oncologist – specialist in Endo and laser surgery. I now need a referral from a Gyn to the Oncologist. I again ask for a Gyn without OB, to no avail. All eight names I am given are OB’s. I leave 8 messages with 8 OB/Gyns.
2/20 – I start projectile vomiting with extreme pain from bowel obstruction around 11pm and we go to Cedars-Sinai ER — again! The barium has gotten stuck at the obstruction and is making me sick.
My husband rouses Dr. Woolf out of bed at 4am. Mike, Dr. Woolf and the ER doc all conspire to try to get me admitted for pain to try and speed up the surgery – all to no avail.
2/21 – Sent home with a compazine shot “to go” and vicodine.
2/22 – Dr Lipper calls to say he will try to get the referral from Dr. Betty Lee, since that’s how the ball got rolling in he first place back in March 1998.
Meanwhile 5pm comes and goes with no return calls from any of the 8 Gyns.
2/23 Dr. Lipper got the referral.
I make an appointment with Ronald Leuchter on March 3. I will hand carry my records.
2/24 – Referral is no where to be found, I contact Heather at Health Source Medical Group and she calls Dr. Lee’s office. The referral is illegible, but it has been submitted. My name and the treatment request can not be read, so based on my information, she submits the referral. She says she’ll call me tomorrow with the number.
2/25 – Still waiting for referral to be approved by HMO for Leuchter.
3/1 – Heather from Health Source Medical calls me with he referral number for my appointment with Dr. Leuchter.
3/2 – A representative from Dr. Leuchter’s office calls to confirm my appointment and give me directions. I am going to the women’s Cancer Center at Cedars Sinai Hospital. Needless to say, I am freaked!
3/3 – We arrive 30 minutes early at the Cedars Sinai Cancer Center. (What a depressing place – very hard to take knowing very soon I’ll be the woman I saw barfing in the bathroom at registration.) I’ve learned that being early helps with HMO Bull shit. And yes, we encounter plenty of it here. The referral has never been sent over to the Cancer Center. The secretary calls Dr. Betty Lee’s office for a copy of the referral. They tell the secretary the referral was never submitted. I tell the secretary that I spoke with Heather at the Medical Group and that I have the referral number written on a piece of paper. The paper is invalid, he needs a referral from Health Source. He calls Health Source and they can’t find the referral either. Finally the secretary get through to Heather, and the referral is faxed over. My appointment was for 2pm, we arrived at 1:25pm, we don’t get this fiasco straightened out until 2:45pm.
Dr. Ronald Leuchter was an hour late, and no one told us. By the time he came to see me I was a wreck both physically and emotionally. My pain pill wore off, and I expected to be at least heading home by the time that happened. In the first 30 seconds of conversation, Dr. L let me know that he had already consulted with all the other doctor’s involved with my case, he’d seen all the reports and he was very familiar with my predicament. It made me feel good that he put as much effort in preparing for the consultation as I did. For the first time in over a year, I am speaking to someone who knows more about Endo than I do. He confirmed that I have an extremely severe case of Endometriosis. Well, duh! It only took me 6 doctors to figure that one out! He also unofficially confirmed that most OB/Gyns are terribly intimidated by Endo, especially severe cases, and that’s why the OB’s dumped me the way they did. I call it dumping, he calls it inaction. But really it’s simply a matter of semantics.
At first he kept saying that surgery was not necessary and started going down the Lupron path. I think all our close friends and family know how much we just want this to be over. Lupron will only buy me 5 years at best – I don’t want to go through this again at 40, at 50 and so on as it seems to hit me about every 7-10 years. Michael and I were both very adamant that surgery is the only option we will consider.
After our initial discussion, Dr. L did a complete female examination. He was very gentle and his nurse had Advil on-hand to give me as soon as the exam was over – they are very compassionate to the pain of Endo. After the exam, Dr. L. brought pictures of the female anatomy and began telling us about all the surgical options. I was aware of all the variables, but Michael was stunned. He had no idea how complicated the disease really is. I think most non-sufferers are surprised when they learn how devastating the damage can be from Endometriosis.
Dr. L. said I am an ideal candidate for Excision Therapy as he did not feel any small or pebble size implants, only large masses. What a relief to here this! Freedom is attainable! We agree that at least one ovary won’t make it thru surgery, so he will try his best to save one. A colostomy seems to be a foregone conclusion since the bowel obstruction was not treated in a timely manner. However, he promised to try and avoid a colostomy at all costs. If he gets in there and does not see any Endo within the abdomen, he will remove my uterus, both fallopian tubes and one ovary. If he gets in there and sees just one implant or he sees massive tissue damage, he will remove my uterus, both fallopian tubes and both ovaries. He expects the surgery to last between 4-6 hours. That’s the good news.
My colon, appendix, liver, kidneys may also be affected by the Endo, and we talked about preparing for that possibility. We all agreed that he will remove my appendix as it is not needed and it will reduce the risk of Endo returning as sometimes small microscopic implants (think of mold) can invade the appendix and facilitate the Endo returning. Dr. L. doesn’t think the Endo has metastasized to other organs outside the abdomen, but there is evidence that it has spread to the colon. Since that is a possibility he has to plan for the worst case scenario.
Worst case scenario: All abdominal organs are affected, a temporary colostomy (3-6months) will have to be performed, a bladder resection, urethra resection (the tubes that run between the kidneys and bladder), and complete hysterectomy.
Best case: Only the uterus and female reproductive organs have disease present, and the colon can be resectioned instead of removed. The appendix will still be removed to avoid future problems.
As you can see this disease runs the scale in terms of good news/bad news.
Surgery is tentatively scheduled for the week of March 22. In the meantime, I have to start taking iron supplements in preparation to give a few units of my own blood for surgery. I have a rare blood type (A-) which means I can only receive A- or O+ (universal donor) blood. And because of the disease, I am more prone to anemia and infection during surgery. I have to say this cancer center and Dr. L are extremely well prepared. I feel like a 50 ton weight has been lifted from my shoulder’s. Three more weeks and I’m free – the ransom will have been paid, and Michael and I will finally live happily ever after.
My suspicion is that I have cysts pressing against my colon, and I hope and pray my suspicion is right. That means we go with the best case scenario.
Our Medical Group has tried to intervene and halt the treatment at every turn. Every appointment has complications. Health Source Medical Group has lost every authorization for treatment so that it takes anywhere from 4 hours to 2 weeks and hundreds of phone calls in order to get the treatment. Now that I have secured a doctor that can do the surgery, I have to wait for authorizations for the surgery. Our HMO carrier is beside themselves because on paper, it appears that I have been denied care by the Medical Group – a major no-no in the State of California. Anyone on an HMO or PPO/POS plan who is fighting Endometriosis must keep a journal of all interactions with the Insurance Company or Medical Group. As if we aren’t sick enough, we have to deal with this crap too. I have been unofficially informed that I am not the only woman experiencing this level of neglect by my Medical Group. A big part of it is that the Insurance companies will only pay a surgeon $800-1,000 for Excision Therapy, which can take up to 8 hours. Yet they will pay that same surgeon $16,000 for a hysterectomy – nearly double. That’s one of the reasons so many women have their Endometriosis classified as a “cancer” so that they can keep their reproductive organs and find relief from the disease.
Michael has been so loving and supportive, even down to the loving teasing about my impending scar. I am so lucky to have found him. He keeps the doctors on track and fights the battles I’m too emotionally drained to fight. His main job has been to procure and maintain the vicodine drug supply. But his “duties” have expanded to Knight in Shining Armor! One day, I had a crying fit over the insurance and he came home from work because “he thought I needed him to be here”!! I know how rare it is for women with Endo to find and keep healthy relationships, especially with men, since they can’t stand to see us in pain, and they really don’t understand the disease. I remind myself daily that there are women who don’t have this benefit, and how blessed I am to have Michael.
Michael and I are well aware that I have a 10-20% chance of suffering a relapse. But I choose to look at it as I have an 80-90% chance of complete recovery. I am taking Oprah’s lame-ass ignorant suggestions for Endometriosis of thinking positively in order to cure myself. (I am only kidding – most of you know how I feel about that fat ignorant slut and her talk show!)
Three more weeks of protein shakes, spirulina and dulcolax! Then I am home free.
The rest of the month is a blur. I under went an IVP to determine the damage Endo may have caused to my kidneys and urethras. I donated my own blood, because I have a rare type, for the surgery. My therapist prescribed a non-binding narcotic to ease the pain during these weeks, as the usual narcotics (Vicodine, Morphine, etc) cause constipation.
I used all the materials available through the ERC and input from sisters on the WitsEndo, Endo Natural, and Endometriosis Support mailing lists. I also ordered and will use the Monroe Institute Hemi-Sync Tapes for surgery. I had the opportunity to listen to a few before I bought them (not the surgical tapes, a different series, the surgical tapes can only be purchased as a set). Some alternative book stores carry the Hemi-Sync series, and the stores will usually allow you to listen to the sample tape to “try before you buy”. They really do work! I had to wrench my mind out of the tape as I was sitting in the bookstore. I went home and ordered all 6 surgical tapes, I figure if it can calm me while I am in this permanent panic state, it can do wonders while I’m sedated!! (LOL!!) I listened to the Monroe Surgical Support Series Tapes in the days before the surgery. This helped tremendously in easing my panic, my anxiety and outright fear of the impending surgery.
3/16 – I am undergoing surgery within the next 10 days due to a bowel obstruction. Adhesions have surrounded my colon and are choking it off, making normal function impossible. The herbal remedy I was trying is pretty much a moot point now, however, it did help save my life while the idiots who pretend to be doctors got their act together. I had rectal bleeding in December, but no treatment until February because my PCP refused to treat me. Oh, yes, in this state that is illegal, but I’ll deal with that after my recovery.
Remember this, Endometriosis will kill you. The diagnosis will be organ failure, but the cause of the organ failure will be Endo. You must stay educated, you must be strong, you must remove the word “No” from your vocabulary. When someone calls you “pushy” or “bitchy” or “opinionated” just smile and say “That’s why I am still alive!”
I am keeping my web site up even after my surgery. I have opted for complete hysterectomy. My chances for contracting ovarian cancer, cervical cancer and/or breast cancer are seven times greater if I keep my ovaries. Also, I want the nightmare to be over and so I am opting to have all ovarian tissue eradicated from my abdomen. That means even the smallest piece of tissue will be removed. This is a very serious decision and not to be taken lightly. I do not encourage any other woman to follow my path with out serious meditation (or prayer) and counseling. Because of my age (31) I am being required to submit a psyche report to my doctors and the insurance company. While many of you see this as an invasion of privacy, I see this as real progress. As long as the psyche report comes back clean, I get my life back.
I have come to see Endo as a terrorist who has stolen my life. If hysterectomy is the ransom, I will gladly pay it. Again, I do not advocate this route for any other woman. However, if you are already on this path, then feel free to send me an email. I will be happy to share my experience. The response may be slow, but I assure you that I will respond as soon as I am able.
My recovery should take 4-6 weeks. I am using all the advice found in The Endometriosis Sourcebook (from the EA), newsletters from Dr. Albee at the CEC, and support group interaction with women who have had hysterectomy as a result of Endometriosis. I’m also using the surgery tips printed by Donna at the WitsEndo list.
While my doctors are not familiar with Albee and the CEC, they are very familiar with the CEC’s theory on Endo. This is refreshing, and has helped a lot in finding my way out of this nightmare.
3/29 – Surgery
I lost both ovaries as they were completely infected inside and outside with Endometriosis. My uterus had multiple implants or “fibroids” indicating severe Adenomyosis. My Appendix was clear of any Endo, but he took it anyway to be safe as the appendix are usually a culprit in relapses. My Kidneys and Liver were clear of Endo implants, but my urethras were covered in adhesions, requiring the doc to cut them loose. That explains all the multiple and recurring urinary tract infections I’ve been suffering from the past 2 years! My Colon was covered from end to end with Endo implants and adhesions. My Sigmoid colon was irreparable and therefore was completely removed. The doctor was able to remove all but one implant and by doing so, avoided a colostomy. The implant is tiny, and should dissolve within 3-6 months.
4/1 – First day Home from Hospital. The ride home was incredible. I felt every pot hole, every bump, every corner, every stop every start. By the time I got home I couldn’t talk, I could barely breathe. Within 5 minutes of being home, Michael had me completely medicated.
4/3 – My Birthday! How fun, a hysterectomy for my 32nd birthday.
4/4 – Do not wait until your options run down to surgery or death – like I did. If the Endo has moved to your bowel, you better think long and hard about your aversion to hysterectomy. I particularly have a lot to live for, and therefore when faced with the reality of death, I chose total hysterectomy over dying. My doctor told me that if I had not made the decision for hysterectomy now, I would have been dead by the end of summer (Aug/Sep 99!!), from a serious bowel obstruction caused by Endo implants and adhesions.
I am not being melodramatic here, or trying to scare you. You should educate yourself as much as you can. I will be happy to relate these first days home after surgery, as fear of the unknown tends to warp our decision making skills. It’s not so bad, just really uncomfortable. I think if my colon hadn’t been resectioned, I would be more comfortable.
If you have IBS symptoms, Colostomy is an aspect of surgery you will have to face. I cried so much the weeks before surgery. I was shaking all the time, just terrified over the colostomy – funny thing was that I had come to terms with the hysterectomy because of all the conversations and emails on Endo Natural.
You may also want your second opinion to be with a cancer specialist, particularly a Gynecological Oncologist. My doc said Endo at Stage IV is much more devastating, deadly and harder to treat than Ovarian cancer. Even the Endo specialists were unprepared for the extent of damage to my abdomen by Endo. The cancer doc was the one who saved my life. They also tend to try and save at least one ovary.
As for the woman aspect, I have a wonderful husband who cares for me and requires a medal for his nursing care. In that respect I am extremely fortunate, so I can’t give you any tips on that subject. My husband is completely fascinated by the scar – calls it his cause no one else will ever see it. He is so loving and gentle with me physically and emotionally that I can’t relate to some one who isn’t as blessed. I can only say a prayer that one day other Endo Women find the true love that I did.
Don’t sit around and wait until death knocks on your door. Take control now, analyze the situation, and if your bowel is in danger, then get into counseling and consider hysterectomy. Lupron will not save an already damaged bowel!! It will just prolong your suffering!
I’m not trying to scare you, but please listen to your body!!