I'm so glad I found this site! This has been a six month plus nightmare for me!
I have never had a "normal" period after the age of 20. It was always heavy, clots.. the whole nine yards. I have been on birth control pills, prempro, etc.. I've had a D&C and it didn't even help.... I am now 42.
December 24, 2009 I started what I thought would be just my regular 10 day period. Nope.. not even close. By the end of January I was still bleeding heavily, the pain was something I only experienced in horror flicks and I just couldn't take it any more- so I went to the ER. They did the basic pelvic on me and the nurse did the medical history and the doctor looked everything over and said "maybe it's time this came out. Has anyone ever talked to you about a hysterectomy?" I cried. Not out of being scared or afraid but out of joy. I have been waiting for a doctor to actually suggest this since I was 25. Thus begins my walk down the "yellow brick road."
See, I don't have health insurance. My normal doctor is a clinic that takes patients on sliding scale and I am normally scrambling to make sure I have enough money for my usual medication. In February, I took a day off of work because I just couldn't get out of bed from the pain. That day, I managed to drag my self out of bed and sat at the computer (with a towel under me... you all know the drill) and started "dialing for dollars." Department of Human Services told me that since I worked and wasn't disabled, they couldn't help me. After hours and hours of calling people only to be told they couldn't help and they'd give me other numbers to call, I finally got a hold of the Charity Department at another local hospital. I talked to Linda, who was as compassionate as they come. She told me that I qualified for the charity program though the hospital that would pick up most of the expenses. The drawback? I'd have to start at square one - with their doctors and ob/gyn clinics. So I got that paper work back to her and started making the appointments.
February turned to March (which ended up with another ER visit where they did ultrasounds) which turned to April and then transitioned to May. Two to Three weeks between doctor's visits was standard. First to the primary care doctor to get the referral. It took two visit because she wanted blood work. First visit to the ob/gyn clinic and the OB/GYN told me that they wanted to do an endometrial biopsy, possibly an ablasion and a few other procedures before they'd even think about a hysterectomy. And no.. they couldn't do the biopsy today, I had to make another appointment. After the biospy (which was two weeks later) I talked with the OB and the attending physician. They both agreed that because I'd had the transvaginal ultrasound already at the ER to confirm a fibroid 6cmX4cm on the front wall of my uterus pressing on my bladder, I wouldn't need any of the other procedures and I was told they would give the go head for the hysterectomy - if my primary doctor cleared me for surgery. Another two week wait, and my primary doctor said she would give the go ahead. That was May 12th.
The beginning of June, I hadn't heard anything and called the OB's office and they told me they didn't get the clearance from the primary. Another phone call and I was told that they faxed it over on the 13th of May. I said "Can you make a copy and walk it up to the OB's on the next floor so I can get this done and over with?" the receptionist laughed and agreed. Hour or so later, the OB's called and said they could sent up my surgical consult. That appointment was May 27th.
May 27th, I went in for my surgical consult - my OB wasn't there - she had finished her residency and handed my case over to another resident (which was fine, I didn't care at this point). We went over everything once again and then a different attending doctor came in the room and I experienced the worst case of dread I have had in my 42 years on this planet.
"You don't need a hysterectomy." he said. "I want you on continuous birth control for at least six months before I'll sign off on this surgery." I said "Excuse me? Who the h*** are you?" He explained he was the attending on call for the day. He then went on to explain that I didn't need surgery, he wanted me on hormones and THAT would solve the problem as long as I did it for the next 10 years. I was in tears at this point and he had the nerve to ask "Is something I'm saying upsetting you?" NO KIDDING DOC, WHAT GAVE YOU THAT CLUE is what came to mind but all I said was 'yes".
"in cases like yours, surgery doesn't relieve the symptoms you're complaining about" "Oh.. you mean I'll still bleed like a faucet if I have the surgery?" He went on to say that "women like me" just needed to be on continues birth control until menopause and that would solve it. "Have you looked at my chart?" he admitted he didn't, but then went on to say that an ablasion would be better for me. I asked him again "did you look at my chart? Did you even go over the ultra sound results to see that the fibroid is on the OUTSIDE of my uterus and wouldn't be touched by an ablasion?" he said "Do you know who I am?" I bit my tongue as I was NOT a happy camper. "Me and my partner developed the ablasion technique." I looked at him and said "Then you'd know that it won't do anything for a fibroid that's no in the uterus, right?" He sighed and said 'Well you could have a fibroid large enough and close enough to the cervix that the uterus is trying to push it out and that's what's causing your pain" - "Well, doc, wouldn't a fibroid of that size be visible on .. let's say.. a transvaginal ultrasound?" he said "yes" then I said "Read the results of my ultrasound, does it say anything about a growth INSIDE the uterus?" He looks and he then said "no" - I then asked him "Why is it that at least 12 doctors - 6 ob/gyns and at least one ob/gyn ER attending feel I need a hysterectomy and YOU are the only one who thinks I don't need one? Why, after *reading* my chart do you come to that conclusion?" He actually rolled his eyes at me and said "Well, if you WANT your hysterectomy, you can HAVE your hysterectomy." and walked out of the room.
I was shaking and in tears from this encounter. The ob/gyn resident was speechless and the nurse had the good form to look ashamed for the guy.
It took them a week to set my surgery date. July 23rd. Almost six weeks. I was told it was because they had to do my surgery in the morning due to my insulin dependent diabetes and them needing to find an attending surgeon to be in the operating room when the procedure was done.
Thanks to "Dr. Jekyll," I have made up my mind to become the most well informed patient he's ever come across. I have watched all the possible surgeries online (thank you Google/YouTube) and have spent at least 200 hours reading and soaking up information. I will be having a LAVH. They will be removing my cervix while leaving my ovaries and possibly my fallopian tubes intact. If there is a deviation needed in this plan, they will have to get permission from my medical advocate (my sister) who was given specific instructions on my decisions regarding any deviation from the surgery that I approved.
I'm sorry this is so long. My SO is caring and helpful but he doesn't understand how stressful this is - he's been so patient. I don't have female friends close by to vent to, so I guess that I'll just have to make due.
Thank you for reading. I'm going to take a pain pill now.
Nor