I started menstruating when I was 16, and ever since I can remember, along with my periods came intense back pain and nausea. My periods were highly irregular during my teenage years, but I always attributed this to my athleticism. I swam competitively for many years and I had heard before that irregular periods can be a byproduct of getting so much physical exercise, so I didn't question this much.
My menstrual pain worsened over the years and by the time I got to college, it was excruciating and debilitating. I never experienced cramps like I'd heard other girls talk about. My pain was always focused in my lower back and hips, an intense pain that would radiate through my legs and be accompanied with unbearable nausea. I dreaded the arrival of my period every month, knowing that for two or three days I would be completely worthless. I couldn't work or go to class; I would be confined to bed or the bathtub, crying and writhing in agony until it finally, mercifully passed.
One morning after I awoke with that familiar throbbing in my lower back, I fainted in the bathroom and smacked my head on the sink, sending me to the hospital with a concussion and a nasty gash in my forehead. At this point, my mother insisted I go the doctor. I had resisted her efforts to get me to the gynecologist in the past; I was, like many young girls, somewhat terrified of the idea of a stranger probing in between my legs and imagined all kinds of frightening instruments they might use in the process. I insisted on going to a female doctor and she was, unfortunately, not very compassionate or understanding of my situation. I felt as though she shrugged off my concerns. She didn't even perform a pelvic exam. She just prescribed birth control pills and sent me on my way. I experienced such negative side effects that I couldn't continue taking the pills. A common side effect of birth control is spotting, and while I was taking them I was almost constantly in pain. I couldn't take it, and I gave up.
I suffered for another year or so, and other troubling symptoms began to appear. My menstrual flow became heavier--I would bleed through a maxi-pad or tampon in twenty to thirty minutes--and I started experiencing urinary discomfort and painful bowel movements. My mother again insisted I go to the doctor. Her colleague recommended her own OBGYN--a man. I was mortified by the idea of going to a male gynecologist, but I am happy to report that he is an extremely kind, compassionate, and understanding person. Even from my first visit I have felt completely comfortable with him. In short, he's really great at his job.
My doctor told me that I likely had endometriosis, although the condition cannot be diagnosed with certainty without surgery. He told me about my options, which included a laparoscopic operation through which they could remove some of the endometrial growths that could be causing my pain. I went ahead with the surgery, and it turned out that I had stage IV endometriosis. I had extensive endometrial growths on my lower spine, bladder, and bowels. One of my ovaries was literally glued to my pelvic wall with growths. I had the surgery about a year ago, and it has changed my life tremendously. After I had surgery I was able to begin taking birth control without the severe side effects I experienced before. I am now able to function when I'm menstruating. It seems so simple--just having the ability to move around, to go to work and class when I'm on my period--but it feels incredible, and it's something I didn't have before. And although my endo was somewhat advanced, it seems hopeful that if I continue taking birth control to prevent it from re-growing, my fertility should not be compromised.
In addition, when I went to see my gynecologist about my menstrual pain, he also discovered some abnormal areas on my cervix. These abnormalities were not presenting a problem at the time, but they could have possibly done so in the future. I had these abnormal areas lasered off during my surgery. When they found these spots, my mother pointed out to me how important it is to see a gynecologist regularly. If I had continued to put off seeing a doctor out of fear or embarrassment, I might still be suffering today.
Endometriosis affects roughly 5-10% of women, but it's also highly under-diagnosed. In my case, I thought for many years that my menstrual pain was simply part of being a woman. I accepted my excruciating and debilitating pain as normal, and this is why I want to share my experiences with other women. It isn't normal! It seems silly now that I was so afraid of going to the doctor, but I have friends in their 20s who have still never had a pelvic exam. Every time it comes up in conversation, I urge them strongly to see a gynecologist and let them know that it isn't nearly as bad as they might fear. And, of course, you should never write off severe pain as "normal" like I did for so long. We're often taught that we must silently suffer the burden of womanhood, and accept our monthly "curse" with quiet dignity. No one wants to hear about that icky stuff, so we should keep it to ourselves. I know that's how I felt, but I was so wrong, and I wish I would have spoken up sooner. Unbearable and incapacitating agony is not just "part of being a woman"!
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Thank you for writing! I agree that we shouldn't feel embarrassed or ashamed.
I myself used to have horrible cramps/nausea and would spend the first day in the bathroom vomiting. I had to schedule school and work around this but was always given crap for not being "tough" enough to function through it. I was always surprised me that a lot of this came from my female friends who would say, "Oh, its not that bad!" or similar things.
Periods shouldn't be this mystery that we hide and whisper about. Its just another natural function that is unique to each person.
Hmm. I have a friend with endometriosis and the Pill like saved her life. It was the only thing
that would help regulate her period and ease the pain. But I don't think hers was as severe as yours. And, of course, the Pill doesn't jive with some women's bodies. I sympathize with that. The first three months I was on it, it changed my appetite and made me nauseous a lot. But after those few months, things thankfully evened out.
This is a great post. I feel the same way about periods. People act like, because we're women, it's PMS and all in our heads, but it's not. It's real pain. I get so flaming pissed to hear conservatives bitching about the evils of birth control - MANY women, including me, take it to EASE MENSTRUAL PAIN and regulate their cycles, not even necessarily for contraception. Pharmacists, for example, have no right whatsoever to assume women take the Pill for contraception. But, by and large, conservatives do - and they ignore women's health and menstrual pain and general well-being.
My friend and I used to have cramps bad, and if we happened to, say, not eat enough for breakfast that morning, we would get tremendously sick at school around mid-morning. Once I fainted in the hallway from cramp pain/nausea on my way to the nurse and had to get wheeled down the hallway in a computer chair by my (male but very caring) sociology teacher. It really is unbelievable that people ignore women's pain in the birth-control debate.
Growing up with a nurse as a mother and being around hospitals all my life, I've never understood embarrassment about getting a pelvic exam. I've had good doctors and nurse practitioners and bad ones. But it has really never felt that different than having a doctor look down my throat. It's what I'm paying him or her to do and I expect complete professionalism.
I think there needs to be more comfort about men and women talking about our bodies. My poor SO hears about every little change that is going on with me, including my genitalia, because it affects him too. Once we have more open and honest communication that occurs WITHOUT judgment, I think people will actually start getting healthier.
To the OP: I'm glad you're feeling better. Thank you for sharing this story. It is very important to be fully aware of what's going on so that we can all be as healthy as possible.
I've suffered with endo for years. How many stories are similar!
Most ob/gyns do not fully excise endo. They just laser or burn off the top.
You really need an endo excision specialist if they problems return. They know all the locations, forms, stages.
I went to the CEC in atlanta, they're great. centerforendo.com
there's others, endometriosissurgeon.com
endoexcision.com
pelvicpain.com
erc.activboard.com/ google it if it doesn't come up
naprotechnology.com
johnleemd.com
endometriosis.org/nutrition
endo-resolved.com
endo101.com
it has nothing to do with talking about the bodies and everything to do with understanding the horrible disease this is
anyone could talk about their body for years, but if they do not understand endo, what's the point?
By the way, the Pill is one of the worst things for women ever. The Pill has actually SILENCED the info that could be out there for women on surgery.
Instead, doctors throw the pill and lupron at them and expect them to go away. Please! Get real. We're ignored because the pill is supposed to 'regulate' things. We are so much more than that. Thyroid, progesterone, etc, is ignored in favor of the pill with synthetic hormones that some pharm company is marketing at us, and depletes our natural progesterone.
Girls and women have natural modesty, don't try to force your views on them and take it all away.
Natural Modesty? no such thing
socialised modesty is what it is, and its a sad thing when it affects the health of anyone.
My doctor is guy too, and he is amazing, I'm still a little sqicked out about talking to him about my vagina, but honestly thats what you get for having "you can never talk to boys about this stuff" pounded in you for years.
Girls and women have natural modesty, don't try to force your views on them and take it all away.
Mmm, I think you just destroyed your credibility right there.
If I was not on birth control, my endometriosis would have already grown back and quite possible gotten even worse. If I did not continue to take birth control, I could develop scar tissue to the point where I would no longer be able to conceive. Endo is one of the leading causes of infertility in women.
Birth control is the only thing keeping me from suffering. I think you're very misinformed.
My mother has endometerosis and she was diagnosed with everything from ulcers to syphillis before being correctly diagnosed. I'm 16 now, and I fear I might have endometriosis as well. I get intense lower-back pains, and the pain radiates from my back to my hips and mid-thighs (this only seriosuly interupted my life once, but for 4 days I could hardly leave the house). I can literally feel the pain in my uterus move to my bowels before I suffer from diarreah. Also, I have a deep echoing pain in my uterus and the walls of my vagina. But clealry, the fact that I'm a woman and still seen as a child, my doctor won't take me seriosuly. My mother, aswell as endo, has MS and has had 2 brain aneyrisms and a stroke. Our Dr. is a family one, and he assumes that any complaint I make about my physical health is just me overeacting to my mother's illnesses. Not true! I'll hopefully be going to a clinic with my sister this month, but as a sexually inactive 16 y/o, I'm nervous. I don't want cold duck lips!
The pain you described sounds soooo similar to mine.
It's actually strange because one of the reasons I thought I didn't have endo was because I had always heard it was hereditary, and no one in my family had ever had it.
So the fact that your mother had endometriosis leads me to believe that it's quite possible you do as well. Maybe there's another doctor you could go see who might address your concerns? I hope everything works out for you!