Questions & Answers

When do you believe your endometriosis started? Please describe the conditions you faced and how you dealt with them.

General Answer: Unless you already know what endometriosis is, you rely on doctors to tell you that you might have this disease. While endometriosis is becoming more known, it is still a disease that so many people have never heard of before.

My Answer: I started having symptoms as soon as my first period began. I always had painful periods. I’d have to leave school and take a large amount of over-the-counter pain medications. I knew something was different; none of
my friends went through this pain and suffering each month.

When were you finally diagnosed as having endometriosis and by whom?

General Answer: It takes an average of ten years to get a diagnosis. Many believe this number to be higher. Between not being believed or heard, we are left to suffer and wonder what is wrong with us. The only way to diagnosis, and often even see the disease, is through surgery. Suspected disease is removed during surgery, and sent to a lab for confirmation. Many skilled endometriosis surgeons will be able to tell you right away if they found endometriosis during surgery, but hold off on an official diagnosis until the lab results return to them.

My Answer: I was diagnosed with endometriosis in my late 30’s. I had complained and suffered through horrendous periods for my entire life. Despite seeing so many good doctors, no one suggested that I could have endometriosis. I was diagnosed with endometriosis during a surgery to remove an ovary cyst. The disease had strangled my right fallopian tube, which had to be removed. Luckily, that surgeon had an idea what endometriosis looked like and was able to sent a sample of the disease to a lab to confirm the diagnosis of endometriosis.

What is a “flare”? How often does it happen, and how long might it last? What do you need to cope with it?

My Answer (and a common answer): A flare-up, or flare, can happen from exerting myself physically, or for no reason at all. Stress, lack of sleep, poor diet, the wrong movement, or seemingly nothing at all. This is what is most frustrating about endometriosis. Instead of being able to fix my diet and sleep, exercise the right way, avoid situations that cause a flare-up of pain, none of that really matters when it comes to flares. I do my best to plan a rest day and prepare when there is somewhere I want to be, but sometimes it just doesn’t matter at all. My flares tend to last 24 hours, but have been as long as 36 hours, and as short as 5 hours. During these flares, it becomes nearly impossible to do anything else but manage the pain. I will take multiple ice-baths to numb the pain, add in another medications, do breathing exercises, put on a funny movie to distract myself, and pray for sleep so that when I wake up, the pain may be gone. Sometimes, I’ll end up calling my doctor, or going to the emergency room. Unfortunately, I almost always have to wait it out.

What pain medications are you taking, and how do they work for you?

General Answer: Most will go through a variety of NSAIDS (Tylenol, Ibuprofen, etc) at maximum doses to manage pain. Some take nerve pain medications, and many of us take progesterone pills to manage period pains. None of these medications work very well.

My Answer: Since my pain has only progressively become worse, even after four surgeries, I take strong opiates for pain. I have been on over 30 different drugs to manage pain and symptoms alone. Even on the strongest of pain medicine, I still have a difficult time managing pain on a daily basis.

How many surgeries have you had, and what were they?

General Answer: Most will have a combination of excision and ablation surgeries. Many will also have to go through added organ removal and sometimes colon resection surgery. These surgeries don’t always remove all of the disease. It is very difficult to find everything to remove, as sometimes they hide, or are microscopic. It is important to remember that the amount of disease does not correlate to the amount of pain someone is in.

My Answer: I have had one ablation surgery, and three excisions surgeries. The final surgery also included a hysterectomy, leaving an ovary behind. Unfortunately, I still have a lot of pain.

Are you ever in no pain at all?

My Answer: Sometimes! There are times when pain is more manageable. This varies per individual, but many will have days with so little pain that they seem like they are fine. We cherish those days as sometimes they are not common. It may appear that the person is doing better, but the relief is temporary. This is a very frustrating part of endometriosis. We can be fine one day, and bed bound the next. Sometimes it happens in a matter of hours or minutes. It’s frustrating, so please be patient with us if we are grumpy about it. We hate it! But we don’t mean to take anything out on you.

Do you expect to have more surgeries in the future?

General Answer: Many with endometriosis have multiple surgeries, some have one and never need more. No one knows why it is like this.

My Answer: I will likely have more surgeries in the future. Without adequate treatment options or a cure, the disease usually returns and requires repeat surgeries.

What should I know to be most helpful to you?

The more pain I have, the more challenging physical activities become. Eating nutritious foods, maintaining the house and yard, doing laundry, and everyday errands and chores can become challenging. Something as simple as hanging out with me at home can be so helpful to cut through the monotony of days. Someone else's presence can also be a good distraction from pain. Making a healthy meal to share, or help with physically demanding chores can be so helpful! Even accompanying me to an appointment can help. If the appointments don’t go well, it’s nice to have a friendly face to talk to and a hug to comfort me. This is the case for anyone with pain. Any kind of chronic pain can become lonely. I miss out on things I want to do, and I can’t do many of the physical activities I wish I could do. If you know someone with endometriosis, look at their life and where you can help. Don’t ask if they need anything, find the need and help. We tend to be the last to ask for help, even though we desperately and often need it.

What are good resources to inform me—and not just in a perfunctory way?

Please see the resource link above for books, help with finding a specialist, mental health help, and more. If you have a resource to share, feel free to send me the information via the contact link at the bottom of this page.

Do people try to give you advice? If so, what advice is certainly not helpful?

While I certainly appreciate any advice and often try whatever is suggested (if I haven’t tried it before), it is always best to listen. Michael J. Fox, who has Parkinson's disease, said: "Those who have the disease are often the experts." Even though he was speaking specifically about Parkinson’s disease, it also applies to many other diseases. Unless specifically asked, it is always better to listen and give room for someone to share and vent. It is unlikely that you will tell me something I don’t already know and have tried long ago. Even if you also have endometriosis, not everyone has the same experience or outcome. A listening ear and encouraging words are always best and more appreciated than anything else.

Why do medical professionals not take endometriosis seriously?

Unfortunately, women’s health is highly understudied and often dismissed as being hormonal, or a behavioral issue. Endometriosis and the associated pain is often dismissed as us being dramatic. Many doctors told me that my heavy and prolonged periods were just “part of being a woman,” and I just had to get used to it. This is a very common response from doctors, even female doctors.

Is the medical world up to speed on endometriosis?

In medical school, they get very little training on endometriosis, and the information is almost always outdated. Many doctors believe that a hysterectomy is still a cure, when there is no cure. Some also still believe that endometriosis is a “period disease,” when it is a whole-body disease.

How do you think it might be improved?

I wish I knew the answer to this question. We need funding to research endometriosis. We need a better diagnostic option and treatment option. Doctors need to understand the complexities of this disease, and that they should send people to specialists who have put time into understanding endometriosis, instead of primary doctors or a standard OBGYN to treat what they really don’t understand, and only further harm their patients. Until the general population of medical professionals know the basics of endometriosis, progress will be minimal.

How will your life change as you age?

In the endometriosis world, we all hope that menopause will be the light at the end of the tunnel. We hope, and some of us pray, that we will no longer suffer through endless surgeries and pain once estrogen levels diminish. In most women, some estrogen is still present after menopause. Endometriosis is known for producing its own estrogen through an enzyme which helps fuel the growth and survival of lesions that can cause pain. Personally, I do not know if menopause will be the hero that I had once hoped it would be. There is a growing number of women who still have pain and need surgeries well into menopause. I just hope to not be one of them.

What thinking or belief helps you cope?

It is important to keep a level head with endometriosis. It is far too easy to spiral down a hole of believing things will never improve, especially if you’ve suffered for a long time. It is also easy to get frustrated and angry with the medical world. Everything is a learning process. Sometimes that means educating yourself to then educate doctors. Doctors don’t know it all, and often don’t know enough about endometriosis. At some point, we all learn to go online and find others with endometriosis to help us find alternative treatment options, doctors, or simply hope. We end of relying on each other to help us pave the path through endometriosis, in hopes that one day, we will be one of the lucky ones with minimal pain and a return to life.

How common is suicide with endometriosis?

It may seem tricky to navigate how to help someone who is suicidal, but it really isn’t that hard. If someone wants you to be around them, do that. Check in on those in pain, help where you see it is needed, and ask how you can help. If something doesn’t seem right, make yourself more available to them. You never know the impact of your presence and kindness on someone else. You can always offer to call an emergency line or take someone to the hospital. The biggest impact you can make is by being present with that person. Don't try to solve the problem unless they ask you for that. Comfort them and listen. It is that simple.

Is it contagious or a form of cancer?

No, endometriosis is not contagious and it is not a type of cancer. While there are similarities between endometriosis and cancer, it is in its own category of disease.

Is it hereditary?

Endometriosis can run in families. It is common for a mother to pass endometriosis on to her daughters. Genetics is only a small piece of the complexities of endometriosis. Other factors can include environmental and lifestyle.

If you have a question, or think I should put any other question in this section, please use the contact button below to send me a message! Thank you to all family and friends who took the time to educate themselves on endometriosis. We appreciate your effort!