Endometriosis Symptoms, Diagnosis Delays & Treatment Options

In this episode, I’m talking about something I see far too often in my practice: women living with endometriosis for years before anyone takes their pain seriously.

Let me say this clearly — debilitating period pain is not normal.

Endometriosis happens when tissue similar to the lining of the uterus starts growing outside of it. Every month, that tissue responds to hormones just like the uterine lining would — except now it’s trapped. It bleeds internally, causing inflammation, scar tissue, chronic pelvic pain, painful sex, heavy periods, chocolate cysts, and sometimes infertility.

And yet, on average, it can take close to 10 years to get a diagnosis.

Why?

We talk about:

• Why severe menstrual pain gets dismissed
• How sexism in medicine still impacts women’s health
• The myth that “bad periods are just part of being a woman”
• Why symptoms are often misread as IBS, anxiety, or just stress
• The difference between endometriosis and adenomyosis
• Why we don’t always need surgery to make the diagnosis anymore

For years, surgery was considered the only “real” way to diagnose endometriosis. But guidelines have evolved. If a woman has classic symptoms and exam findings, we can start treatment without immediately jumping to the operating room. Imaging can help — but it’s not always required.

When it comes to treatment, the goal is simple: reduce estrogen stimulation.

Endometriosis feeds off estrogen. So we focus on hormonal strategies that suppress that stimulation.

Sometimes surgery is necessary — especially for large cysts or extensive disease. And in cases of adenomyosis, hysterectomy can be life‑changing when childbearing is complete.

But here’s what I want women to know:

If your period pain is taking you out of work, school, intimacy, or daily life — that is not something to “push through.”

Chronic pelvic pain deserves answers. Painful sex deserves answers. Heavy bleeding deserves answers.

You deserve to be heard.

In this episode, I break down endometriosis in plain language so you can understand what’s happening in your body — and advocate for the care you need.

You can write to us at Questions@GynoInfo.net

And follow us on Instagram @gynoinfo

Transcript

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Welcome to Gyno Info, Frank Talk with Dr. Burkey, the podcast dedicated to teaching everyday women what they need to know about their body and how it works to successfully deal with the healthcare system and communicate with their doctors. Each week, I'll provide you with new information and practical tips about gynecology and women's health care. I want to prepare you for your doctor's appointments by teaching you what to expect, what information your doctor will need to know from you, and what questions you will need and should ask her so you can be confident and make the most out of every visit. GynoInfo will give you the knowledge you need to take charge of your health and do this in a clear and frank way that you can understand without having a medical degree, one episode at a time. So now let's begin. Hello. Welcome back to Gyno Info, the podcast about women's health in normal, everyday language that normal everyday people can understand. No special medical words, no doctor speak. A special welcome to those who just discovered us and are listening for the very first time. Please take a moment now to subscribe to Gyno Info. If you don't, then you might have a hard time getting back to this episode, in case you have to interrupt in the middle and would like to finish the podcast later on. The same episode might not show up in your feed anytime soon. Today I'm going to talk some more about endometriosis. I have already talked about endometriosis a couple of times in my question and answer episodes, once, less than a month ago, in episode 138 about the saliva spit test for diagnosis of endometriosis, and once back in December 2025, in episode 124, when somebody asked about the difference between endomyosis and endometriosis. Today, I'm just going to briefly review what endometriosis is and why it seems to take forever for many women to finally get the right diagnosis and then the right treatment for their endometriosis. I will then spend the rest of the time we have talking about how to treat it and what newer developments there are in the treatment of endometriosis. Endometrium is the medical word for the lining of the inside space in the uterus where the babies grow, the cave of the womb, or the cavity in Dr. Speak. This lining grows and is being shed during the menstrual cycle every month as the period, as blood flats and bits of tissue. Another name for that lining that you may have heard on this podcast series is also the mucosa of the uterus. In Doctor Speak, an osis generally means a medical problem, a condition with some kind of tissue. Endometriosis then means a medical condition where the endometrium, the uterine lining, grows in the wrong place. That's the problem. Instead of inside the uterus, where it's supposed to be, it grows inside the abdomen, inside the belly. It can grow anywhere inside your belly, on the surface of the pelvic and abdominal organs, such on the surface of the tubes, the ovaries, the uterus itself, the bladder, or on all the different parts of the bowel, even on top of the liver. It can also grow stuck to the belly wall, the peritoneum. Sometimes it grows inside the ovaries or inside the uterus or even as far away as the lungs. In all those places, this endometrium grows and sheds just like it does when it grows inside the uterus. But instead of the blood going to the outside, through the vagina, into whatever you use to catch your period blood, tampon, a pad, or a cervical cup, the blood flows inside the belly. This internal bleeding causes severe pain and inflammation every month. When it happens over and over and over again for many months and years, it leads to scar tissue. The scar tissue can cause chronic pain and also, depending on where it is located, excruciating pain with sex. The scarring of the tubes can block them and be responsible for infertility. And when endometriosis bleeds inside the ovaries, it creates sacs filled with old blood, so-called chocolate cysts. You may have heard that word. In the rare cases, when nests of endometriosis grow inside the lungs, a woman will puff up blood every month at the time of her period. That's pretty scary. When there are nests of endometriosis inside the wall of the uterus, it is called a nomiosis. Here it also bleeds every month, and again it cannot escape out through the vagina, but it is trapped inside the muscle wall where it causes big bruises every month, which are very sore. Sometimes this pain from the bruises lasts the whole month, in which case adenomiosis does not just cause killer cramps with periods, but also pain every time a woman tries to have intercourse and just pain all month long, sort of a dull ache in the pelvis all the time, a heavy feeling. And it is not a rare disease. About one in ten women is thought to have endometriosis during the time between her first period and when she goes through menopause. And in women who are unable to have children who are infertile, the number is one in two instead of one in ten. The good news is that endometriosis is very treatable, especially if you catch it early. But that is exactly one of the main problems with endometriosis. Even though it often begins soon after a woman begins to have periods, endometriosis rarely gets diagnosed before the age of 30. By that time, it may have caused severe scarring, chronic pain, and infertility, and is then a lot harder to treat. It's really hard to believe, but the average time from the time a woman first has symptoms that point to endometriosis to the time the diagnosis is finally made and she receives treatment is on average close to 10 years. Depending in what part of the world a woman lives and what kind of access she has to medical care, it can also be twice as long, more than 20 years. And for many women, the diagnosis is never made. Many women will never get any relief from their suffering with every period and with every time they try to have sex, or relief from their constant pelvic pain and the forever heartbreak of never being able to have a baby. Not only do they not find relief, they also get dismissed as whiners, and then they even get blamed for not getting pregnant. Even under the best circumstances, in countries with the best medical care, the diagnosis of endometriosis and therefore the treatment for endometriosis is usually delayed for almost five years. Part of the reason for that is, of course, sexism, pure and simple. When a woman says she has pain, she's often not taken seriously. Healthcare providers are much more likely to try to find out the cause of pain in a man. Pain in a woman is often just dismissed as them being emotional, whiny, exaggerating, and because of that, it is ignored and dismissed. Many studies show that a woman waits about half an hour longer to get pain medications for the very same type of pain than a man, and will get then less pain medication than a man of the same size and weight. This is actually no different for acute heart attack pain, chronic arthritis pain, or pain after surgery. Men are considered brave when it comes to pain and get immediate attention, and women are considered emotional, and this is by both male and female healthcare providers. This kind of sexism in medicine sometimes has deadly consequences and leads to severe malpractice. And I haven't even started to talk about racism in medicine. That's even worse than the sexism. But I'm not going to talk about it today, or we'll never hear more about endometriosis once I get going on that topic. The second reason, symptoms that should be pointing to endometriosis but are being dismissed is the antiquated and old-fashioned idea that period pain is natural and just part of being a woman and should be endured, which is, of course, utter BS. It is true that regular period cramps, dysmenorrhea, can happen at the same time than endometriosis pain. Endometriosis is basically the same kind of tissue as the lining of the uterus, the endometrium. It grows and sheds the influence under the same hormones as the uterine lining. And as I discussed in one of my first podcasts, episode 105 on periods, it cramps, when the lining of the uterus falls apart, it releases prostaglandin, a hormone that causes pain and cramping of muscles. But the pain caused by endometriosis, even though it is caused by the same prostaglandins, is much stronger. Typically, it starts several days before the period bleeding, may even be present all month long and just get worse before the period. And often it does not really respond to the usual cramp medications like ibuprofen. Typical are also pain with intercourse and excessive bleeding, especially if there is a endometriosis in the wall of the uterus. Taking birth control pills, which usually makes regular period cramps a lot better, often does not seem to touch the pain of severe endometriosis, even though it is a treatment of choice for mild endometriosis. But with really bad endometriosis, it just doesn't touch it. One other major reason why it often takes years to diagnose endometriosis is the fact that traditionally the only way to decide if a woman really had endometriosis was by surgery, of a surgeon actually looking inside a woman's belly and seeing the endometriosis, either by opening the belly with a large incision or looking inside through a keyhole incision with a laparoscope. With over 200 million girls and women worldwide having endometriosis, it is no wonder so few of them ever got any early diagnosis. Many did not have access to surgery, or they didn't want surgery, or simply were not taken seriously enough to be offered surgery. Luckily, this is changing now. If a woman describes the typical symptoms of endometriosis, more than three out of four times will she then turn out to have endometriosis when you look for it during surgery. When the typical findings of endometriosis on a physical exam are added to those classical endometriosis symptoms, doctors will find endometriosis in nine out of ten women during surgery. Which brings us back to what I've always been saying for decades. Doctors need to learn to listen to their patients a lot better. Unfortunately, many of them do not. They say surgery may still be the gold standard, but treatment of endometriosis should be started based on symptoms and physical exam. So it's been shown to be almost 90% correct, anyways. So surgery is not necessary to start treating a woman. This brings me now to the treatment of endometriosis. Old ones and newer ones. And again, the earlier the treatment is started, the better. The basic principle behind all endometriosis treatment is the fact that endometriosis is fed by the female hormone called estrogen, which is made by the ovaries as part of the egg production process. The more estrogen you feed it, the faster and stronger endometriosis grows. So the logic behind all endometriosis treatments is to either take estrogen away altogether and starve the endometriosis cells by taking away their food, or give something that counteracts the effect of estrogen and suppress endometriosis in that way. The first basic treatment that works well for young women with mild cases of endometriosis are low-dose regular birth control pills. They're most effective when taken continuously without pause, which generally stops all bleeding from inside the uterus, but also from the endometriosis in the wrong places. This generally helps against the cramps and keeps endometriosis from getting worse because these pills give so very little estrogen, which is the food for endometriosis, so it doesn't grow very well because it doesn't get enough food. And on top of that, the second hormone in the pills, the progestin, counteracts the estrogen effect. It works against the estrogen. The next treatment level up from regular birth control pills, which contain both estrogen and progestin, is to give progestins alone. These are hormones that work against the estrogen feeding effect on endometriosis. They stop endometriosis cells from growing wherever they are. And they also stop the monthly periods, of course. Progestins can be given as pills or shots, or only locally directly inside the uterus as a hormone IUD. If the endometriosis is mostly in the wall of the uterus, so-called a domiosis, hormone IUDs work quite well. Progestins, especially in the higher doses than those used in regular birth control pills, will also work quite well for mild to moderate endometriosis, just by suppressing the effect of the naturally produced estrogen in the body. In the past, sometimes artificial male hormones were also used to work against the effect of estrogen on the endometriosis cells. This worked quite well, actually, even better than birth control pills or progestins in suppressing the endometriosis pain. But of course, it had a lot of male hormone side effects, like acne, unwanted male-like hair growth, and male-like hair loss, weight gain, and sometimes even deepening of the voice. So they're rarely used these days, these male hormones. Another option for treating severe endometriosis is to put a woman into artificial menopause, stop all estrogen production altogether. This is done by medications that stop the brain from telling the ovaries to work. So the ovaries stop producing any hormones, including the estrogen that endometriosis needs as food. This is a very effective way to starve the endometriosis cells, but it has all the unpleasant side effects of menopause, from hot flashes, night sweats, sleeping problems to brain fog and problems concentrating, even dry vagina and pain with sex. If these medications are used for a long time, they will also cause bone loss and osteoporosis. That is why they're often combined with very low doses of estrogen and progestins, low enough not to stimulate the endometriosis cells, but still high enough to protect from bone loss and dampen the menopause symptoms a little. And for big lumps such as chocolate cysts in the ovaries, surgery will still be necessary to remove those. Also, large white patches of endometriosis all over the pelvis need to be cut out with a scalpel. But many small nests of endometriosis, even if they're all over the belly, are most effectively treated with specialized lasers that are particularly good at destroying endometriosis without causing a lot of scarring, like normal surgery does. For women who have had all the children they want and whose main problems are pain with periods and very heavy bleeding with their periods because they have adenomiosis in the wall of the uterus, removing the uterus is always the most effective option. Endometriosis surgery is almost always followed by long-term treatment with medication to keep endometriosis from coming back, unless a woman is trying to get pregnant. Then the medications will be stopped for a while so the woman can get pregnant, but may well have to be restarted after pregnancy. As I said at the beginning, endometriosis is not a cancer, but a chronic disease. And once you have it, you will need to deal with it for most of your life. But there are now very good and effective ways to deal with it. That's the good news. This is all the time we have for today. Endometriosis and pregnancy is such a big topic that I will have to do that on another day. This brings us to the end of this episode. I hope you found it both interesting and useful and you will share it with as many of other women as you can. Remember that if you have any further questions about endometriosis or any other issue having to do with women's health, please don't hesitate to send them to me at questions at gynoinfo.net. Again, that's questions at gynoinfo.net. And please also make sure that you click the subscribe button wherever you listen to or watch GynoInfo so that you can get back to it easily whenever you want. And the more people subscribe, the easier it will be for others to find us. Thank you. Until next time. Thank you for listening. And remember that you and your health are super important and deserve your full attention. Don't ever put off contacting your doctor because you're scared or embarrassed when something feels wrong about your body. Doctors are here to help you, not to judge you. And also, regular well-woman visits are always a good idea that you should make time for. You deserve it and you owe it to yourself, and you owe it to your body and your health. This podcast is part of Pride House Media, hosted by me, Dr. Burke, produced and edited by Josh Rosenzweig. Original music composed by Nell Balaban. If you enjoyed this episode, please subscribe wherever you listen to podcasts. And while you're there, leave us a rating and a review. It really helps others discover the show. Stay connected and join the conversation by following me on Instagram and Facebook at gyneoinfo and on LinkedIn at gynefo podcast. Remember, any questions that I answer or information that I give you on this podcast are to be understood as information only, not treatment of your medical problems. While I'm a very knowledgeable gynecologist, I'm not your gynecologist who has talked to you and examined you personally and is therefore actually able to treat you. So please consult your own healthcare professional with any medical questions or concerns.