QuestionHi Martha,
Call me Allyn. I am 25. Periods have been painful for me since I was twelve. I know that I have had PCOS. I was in the hospital for ruptured cysts and internal bleeding twice as a teenager. I also think I might have endo. A doctor first told me he thought I had it based on my symptoms when I was 16. I have heavy, long, painful periods. I experience extreme fatigue and take iron for anemia. I have tried several different types of birth control pills. Some months are worse than others as far as pain goes. I don't miss work much, but there is no way that I am mentally there when I am bleeding. I have a degree in biochemistry, so I'm more familiar with hormones than most.
My real discouragement comes from how I am treated by doctors. I have been to about five of them. I was told that bad cramps are normal, 10-11 day periods are not that unusual, people who have random spotting are those who take birth control irresponsibly, and that if birth control doesn't significantly help my symptoms that I can't possibly have endo. I have a very demanding and physically hazardous job. I can't take off right now to have surgery for both financial and professional reasons. I also have epilepsy, which makes surgery dangerous. I have mainly tried to treat the symptoms.
Most every gyno I have seen has said that endo is what I probably have. Two of them said it is not worth cutting me open because they are so sure. While I have sought the magic birth control pill that will stop the cramps, minimize the bleeding, not make me retain 10lbs of water, not make me so nauseous that I can't work, and not make my breasts so sore that I can't sleep, I have yet to find it. Some pills work better to stop the bleeding, but they seem to increase the pain and cause extreme nausea.
The doctor I saw most recently said that while she is sure that I probably have endo, she does not consider it a serious problem. She said to me, "If you are so uncomfortable with what comes naturally with being a woman that we can give you a Depro shot that will stop your periods." I have avoided this in the past because of the published side effects. She said there are no side effects. She seems to think that women in medical studies list many unrelated health issues as side effect of the drug they are trying. She also said that endo is totally based on weight. I am currently overweight and working on that. However, I had these problems when I was thin. I addressed this and my doctor told me that you can't really expect your periods to even out and be normal until you are about twenty. Everything I have read about Lupron has been discouraging. I am unsure about the side affects of other treatment options. I just feel so intimidated going to the doctor. My doctor laughed when I told her that I hurt so bad I can't even wear tampons. Then she examined me and said that my vaginal tissue is so swollen and irritated that I could not possibly be a virgin. I am. I will be for a long time. It was a personal decision for me so I was offended. I have sensitive skin, so by the end of my period, when I have worn huge pads for nearly two weeks, I am always swollen and irritated down there. I don't like to be ignored or be made to feel like a hypochondriac. This same doctor had to sign a work release for me because I was sent home from work with extreme pain, heavy bleeding, and high fever today. She told me I was probably getting the flu. She said that if I can prevent anemia with iron that endo is no big deal. If I want to be happier I should lose any extra weight and exercise. She told me that endo will not kill me or I would have been dead a long time ago. I was basically told to get a hobby or to refocus my energy away from my female problems. What do I do? I'm intelligent, shy, and feel like I've imagined my problem into something bigger than it is. How do I deal with the doctors? I am limited to a list of the ones covered under my healthcare plan (about 15 doctors in my area)? I may have surgery eventually, but it is not an option now. I also need some sleep as I have to set an alarm clock at night to deal with my period to prevent accidents. I want to tell that doctor to try that for half of the month every month and see how it feels. I also don't know what to do about the "diaper rash" I get from wearing pads for so long so often. Do those little plastic cups work? Are they a good alternative; I think they are pretty new. What do others do to make it through the night without ruining their sheets? I'm pretty stressed now. Thanks for reading this.
AnswerDear Allyn,
I totally understand your frustration...I felt the same years ago when I was trying to explain to doctors, friends and family, how I was having near-labor pain cramps. It was hard because no one seemed to understand, or they thought I was over reacting, however, I find it hard to believe that TODAY that you have to put up with this!!
I know you need to use a doctor w/in your health plan, but try to locate someone who specializes in endo/fertility. They are out there. I am sorry you have had to deal with such lax advice. And still today these doctors exist-apparently they have never suffered as we have to know.
My endo past was much the same as yours...I did try a BC pill that I was on for many years. It was a very low dosage and worked wonderfully for me until I began with migraines. It was called loestrin. My level of discomfort, fatigue and pain seemed never ending thru the years. I also do not trust the Lupron and Depro treatments.
I also have discomfort from the usage of pads and I use a baby lotion after showering each day to help with that. I also cannot wear tampax and haven't for years...makes me cramp.
I am still doing the cramping thing...I now use a prescription called Anaprox, an anti-inflammatory that you take as needed at the first sign of your period or pain. It was actually designed for arthritis patients, but works for endo. It helps reduce the inflammation of your endometrium wall, thus allowing better blood flow and in turn less cramping and bloating. I find that it was a better alternative to all those other controversial drugs.
Also, try getting onto the Endo Research Center website, they might be able to help you and/or give you better, up to date advice.
I hope you find relief! I know just how you feel. Best of luck to you!
Martha
