Q & A – Living with Endometriosis

Living with Endometriosis is complicated; which often raises questions. It’s one of the most misunderstood and tricky diseases, in my opinion.

I pride myself on being an open-book and speaking the truth about chronic illness. Sometimes I wish people would ask more questions about Endo.

It’s no secret that Endometriosis, as well as many other auto-immune related diseases, can cause extensive damage to the body. But what they don’t tell you is how deeply it hurts to be misunderstood and judged by those that don’t understand it, especially the ones that don’t even try.

So, if you’ve ever wondered about Endo, your questions are now answered!

Questions and Answers About Endometriosis

Q: If you know surgery will reduce the pain, why don’t you have it done as soon as possible?
A: Well, much like the illness, the answer can often be complex. If you have a good relationship with your doctor, he or she might leave the decision up to you. Some patients have other reasons for waiting – such as planning finances to pay for it (with an average of $10,000 per surgery without insurance), planning a family (most optimal time for pregnancy is within 6 months of surgery), lack of personal care during recovery, or work schedule conflicts. We all have our own reasons for waiting. Once the surgery is scheduled.. we can be relieved to know that pain will soon be reduced.

Q: Why don’t you just have a hysterectomy and be done?
A: Probably for the same reason that you’ve chosen to “keep” your uterus. Many women with Endo have different reasons for waiting, while others are unable to wait. The reasons for not having an immediate hysterectomy would be due to the expensive surgery, 6 weeks of recovery time, the potential for a future pregnancy, the possibility of the pain returning, and so much more. We have our reasons and they’re all VERY personal. Frankly, this question can often be rude, especially if you don’t live with the disease.

Q: You were fine yesterday, why aren’t you feeling well today?
A: Living with a chronic illness, like Endo, means that we live with uncontrolled inconsistency. Our pain can often be cyclical, meaning it’s sometimes easy to predict based on our menstrual cycle. But every so often we can get a flare… or Endo can attack us real suddenly. One thing I’ve learned after living with Endo for the last 7 years, is to expect the unexpected. Endo is different for EVERY woman that has it and that’s the truth.

Q: My spouse’s cousin has Endometriosis and she’s never had surgery. Why is yours so different?
A: Well, technically, Endo can be suspected but often cannot be confirmed without surgery. As I’ve said before, this disease is different for every woman – no two are alike because we as people are not alike. Endo can grow, spread, and fuse together differently. Some women are diagnosed at age 15, others are diagnosed at age 40. Some women are able to go 10 or 15 years without needing a surgery. While others need to have surgery to remove lesions, scar tissue, or adhesions every 6 months or every 2 years. Some women, like myself, suffer from an aggressive form of Endo and an adhesion disorder. My Endo fuses organs together and spreads across my abdomen. Like clockwork, I’m in crippling pain every 2 years.

Q: Didn’t you have surgery last year? Why did you feel okay last year and now this year you’re tired and in pain?
A: Endo is in somewhat of a “remission” post-op; which means as your body heals from surgery, the disease is not active. As soon as that “clock” starts again, the disease grows and spreads. We never know when the clock stops or how long it will be before the next surgery. We also don’t know how we’ll feel from one day to the next. This is why we appreciate patience and understanding.

Q: Why are there stages of Endometriosis and what does it mean?
A: There are 4 stages, similar to that of cancer staging. The stages determine how high Endo spreads, how deep it grows into your muscles or organs, and how quickly it returns. It does NOT determine your pain levels though. Some women with stage 4 may have less pain than a woman with stage 1. I do know many specialty doctors, mine included, have moved away from using stages to diagnose Endo. With anything, staging can have a stigma attached to it.

Q: Does that mean that Endo is cancerous?
A: Rarely. But, in a recent study, Endo was found to have similar properties as cancer cells – they grow and spread in the same manner (which does NOT mean it’s cancerous).

Q: Is it true what Cosmo said about orgasms reducing your chances of getting Endometriosis?
A: *face palm* Stop. No! Listen… Cosmopolitan Magazine should be absolutely ashamed of themselves for nationally spreading the worst piece of fake medical advice. Ever. Endometriosis is NOT something that can be warded off, prevented, or cured. It is not a disorder… it IS an auto-immune related disease that affects your entire body. An orgasm will absolutely NOT affect whether or not you “get” Endo. This disease is (likely) genetic. And please, do not listen to the pathetic “advice” from a magazine that clearly doesn’t bother conducting proper research.

Q: Why is it possible for you to have a baby, but others cannot?
A: Only God can answer this question. I pray almost daily for my Endo sisters that want a baby – especially for my friends in the community. It pains me to see the women who have experienced loss and I pray God opens their womb and blesses them with the miracle of a baby.

Please note: I am not a medical professional. This article is not meant to serve as medical advice – you should always consult a doctor if you have a health concern. This article is meant to spread awareness.

Learn more from previous articles:
– How to Process Endometriosis
– What You Should Know about Endo Sufferers

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