It took my internist over six months to reach the conclusion that I should be seeing a gynecologist and not him. The way he researched my salty taste was:
1. Put me on Perdiem, a product that adds vegetable fiber to your food naturally. He asked me to come back in three weeks to see if there was any change. No luck. See more about this below.
2. Recommended I get a Lower GI in two weeks, the following week I reviewed the results of the test with him. No improvement on salty taste, no finding.
3. Recommended I get an Upper GI in two weeks, the following week I reviewed the results of the test with him. No improvement on salty taste, no finding.
Okay, so the first problem I found was that Perdiem comes in several forms, one has a laxative associated with it, the other does not; some are granules you take with water, the other is a pill. I bought the laxative type being unfamiliar with the product and he didn't make the explanation.
Then, the Lower GI and Upper GI tests both require you to drink substances that clean out your system. These also use a chemical that constipates you following the test so after 9 weeks I am pretty weak and light headed. This is about when I discuss that part of the problem with the doctor and get the information about the two types of Perdiem, so life is a little better, but still I have this salty taste in my mouth.
4. Recommends that I have a sigmoidoscopy, a test that he can perform in his office in two weeks, because it again requires the cleansing regimen.
The cleansing regimen, at the time came in the form of a medication you added to a gallon of water and drank throughout the day. It tasted like sunflower shells you've spit out (rather icky) and much more so as the day progresses. Now days, they have a bottle of stuff you add to a coke or juice and it boils through you as you drink more and more water which is much easier to take, but requires you to not have anything wrong with you.
5. My colon is so active at the time of the Sigmoidoscopy that the doctor, my general practitioner is unable to do the test; it hurts me and he fears he will injure me.
6. At my next followup appointment in three weeks, I have developed a pain in my lower abdomen and it won't stop hurting. Day and night, ache tells me to pay attention. The doctor decides it is time to do an MRI since it will tell him if there are any masses and will be more helpful if I require surgery.
7. The results of the MRI show that I have a cyst on my ovary. I am in increasing pain. The doctor refers me to a gynecologist, but not a specific one I can see immediately. Luckily I had signed up as a newcomer to a gynecologist (the wait period was 8 weeks) two weeks before. Before the weekend is over, in tears, I call the doctor on an emergency phone number and receive a prescription for pain medication and an appointment for the following Monday.
8. The exam, the MRI results and our discussion of my frequent high spiking temperatures at the start of my cycle, my long term history of using birth control to make my monthly cycle less heavy and painful rather than continued use of three types of pain medication and bed rest for three days each month, followed by an attempt to use a new medication rather than birth control led her to believe I probably had Endometriosis. The result is the doctor puts me on birth control again in the hope of reducing the ovarian cyst.
At this point, I sought help in the form of the best book I could find on the topic of Endometriosis (only one book at the time) compared to the many on offer now (link takes you to the Amazon listing of many of them). The main thing I learn from the book is that woman with Endometriosis can attempt to avoid surgery because they want children or they can opt immediately for surgery in the form of a hysterectomy and removal of the ovaries. The ovaries produce the hormones that cause the endometrial cells to create pain and internal bleeding. Or the individual can opt for a series of short term treatments so that they can have a child. I wanted children.
9. On my three week follow up appointment, I am still in pain. The doctor suggests an Investigative Laparascopy, with the noted possibility that she might be able to use a laser to remove any Endometerial adhesions (or scar tissue).
The above test is outpatient surgery with a return to work after three days (I needed a week). I received a video of the surgery showing the lasered areas. I'm still on birth control and after 6 weeks, I am still in pain requiring medication.
10. My gynecologist then recommends I wait three more months and when I am still in pain, she puts me on Gonadotropin-releasing hormone (GnRH) agonists. This is a six month hormone treatment that puts me into an artificial menopause state. It works as prescribed but my pain does not diminish.
11. After waiting to see if my condition would improve in the next six months I continued to have pain and at that time we scheduled a second Laparascopy to check the ovary where I had the pain. During this surgery, the ovary was removed. I continued to have pain for another six months during which I had a period for over three months straight, a potential sign of other problems. I could have opted to use the Gonadotropin-releasing hormone (GnRH) agonists but by this time I had pretty much isolated myself, didn't date and couldn't even imagine anyone touching me.
12. I decided on the hysterectomy and the removal of my last ovary. This surgery required a second opinion and given the videos taken during my Laparascopy I had no difficulty in getting it.
This disease is highly emotional, causing stress, depression, and grief. I worked full time during the progess of the disease. The pain continued for a time but my life improved dramatically.
I require large doses of estrogen since the organs that normally provide this hormone are not there to do so and your other hormone producing organs get overworked. Without estrogen treatments, I do not sleep, I get highly agitated and jumpy, my skin burns. I have crying fits where I can not stop. With estrogen, I lead a fairly normal life.
Although the hormones I took throughout my life to control the pain, fevers, bleeding, cramping, panic attacks and the like can prevent birth, I did not use these drugs for that purpose, nor do I do so now.
A year after my hysterectomy, I finally returned and had my colonoscopy where they found and removed a precancerous polyp of the type that spews salt. Finally four years after I sought the solution to the salty taste, the problems were all fixed. Hurrah.
My family has a history of endometriosis, including some of my cousins and some of my sisters had hormone problems and cysts.