“I have endometriosis – here are seven things every patient should know”

It takes many women years to diagnose endometriosis, but identifying the cause of their symptoms is often only the first step in managing the condition.

After nearly three years of intense pelvic and back pain, I was diagnosed with endometriosis, which causes tissue similar to the lining of the uterus to grow in other places, including the ovaries and fallopian tubes.

I was diagnosed in November 2021 after a laparoscopy – an examination of the abdomen where doctors in some cases perform a procedure to remove endometriosis.

But after leaving the hospital, there was no follow-up appointment or check-in. I was prescribed the birth control pill for endo patients for pain relief and sent on a trip.

Although I knew that endometriosis can affect my fertility, I was not given information about fertility treatments, the dangers of surgery, or the types of endometriosis that exist.

Because of the limited research on the condition, it takes doctors an average of eight years to diagnose a patient. 72% of women do not receive written information about endometriosis after diagnosis.

So maybe it’s no surprise that I’m a bit in the dark about how Endo will affect my life.

I chatted with Dr Hemant Vakharia, a consultant obstetrician-gynaecologist, to clear up some of the misinformation about the condition and discuss some of the little-known facts about Endo.

Superficial endometriosis versus deep infiltrating endometriosis

When you are diagnosed with Endo, some women (myself included) are told what “stage” of the disease they are in, based on the American Society for Reproductive Medicine (ASRM) grading system.

It starts in the first stage – where there are minimal lesions on the surface of the organs – and progresses to the fourth stage – where you have large cysts and go deep into the tissues.

But Dr Hemant doesn’t think the ASRM grading system is very effective. Instead, he classifies a patient’s endometriosis diagnosis into one of two broad groups: superficial endometriosis and deep infiltrating endometriosis.

In superficial endometriosis, tissue grows on the surface of the ovaries or other structures and becomes inflamed.

In deep infiltrating endometriosis, the dense adhesions and cysts begin to affect other organs in and outside the pelvic cavity, even the heart and lungs.

The ultrasound

If conservative therapies such as birth control pills fail to control a woman’s pain before a formal diagnosis is made, she is usually referred for an ultrasound.

But while you may get an ultrasound to rule out endometriosis, it’s not always conclusive.

Dr. Hemant explained: “If the scan is ‘normal’ they are often rejected and not taken seriously.

“But what we do know is that negative imaging — the kind you see with an ultrasound — doesn’t rule out endometriosis because you can have superficial endometriosis, which isn’t necessarily detected by ultrasound or MRI.

“So endometriosis clinicians have a very low threshold for offering patients laparoscopies.”

While scans detect “deeply infiltrating endometriosis,” they can essentially have a hard time identifying superficial endometriosis.

The MRI

Dr. Hemant said: “We often use MRI in patients suspected of having deep infiltrating endometriosis and you need to understand how other structures are affected.

“But we do know that MRIs don’t necessarily rule out superficial endometriosis.”

For this reason, an MRI is usually only offered to patients who suspect deep infiltrating endometriosis or who continue to have pain after a diagnosis of superficial endometriosis.

Do you need to freeze your eggs for your laparoscopy?

During a laparoscopy — which is often used to diagnose endometriosis — doctors may decide to perform a procedure afterwards to remove the endometriosis.

When a woman gives birth, her ovaries contain a limited number of follicles — these are the fluid-filled sacs that surround the eggs and release an egg during ovulation.

Dr. Hemant said: “Any time you operate on the ovary, there is a chance that when you open the ovary, you are removing a cyst or removing an endometrioma. [a medical term used for the endometriotic cists on the ovary]that some normal tissue disappears in the process.’

To better explain this, Dr. Hemant used the analogy of an orange.

He said, “If you peel an orange as you take the peel off, part of the segment will inevitably come off with it.

“That’s why, because you remove the cyst or endometriosis, if you remove some normal ovarian tissue with it, your overall ovarian reserve may decrease.”

“The alternative way to treat them is to drain them, but that way they have a chance to come back.

“Often when someone comes to you with a difficult concept, they work with the fertility doctors and we recommend draining them rather than removing them.”

When it comes to freezing your eggs, it’s important to talk to your doctor about your options.

preservation of fertility

Everyone is talking about freezing their eggs, but have you ever heard of ovarian tissue cryopreservation?

Dr. Hemant said: “When it comes to preserving fertility, there are two options. One is by freezing eggs.

“The other is called ovarian tissue cryopreservation, where you take a piece of ovarian tissue that can then be frozen and put back into the patient at a later date for fertility or other reasons.”

How does it work?

Dr. Hemant said: “In the ovary you have a finite number of follicles, so you can take a third or a half of the ovarian cortex in an ovary and freeze that.

“What you’re doing is basically freezing the patient’s age. So if you had it done at age 25, you were essentially floating part of your ovary at age 25. Then you can use it again later in life.’

What Natural Treatments Can You Try?

Dr. Hemant said: “As far as natural remedies go, there isn’t a lot of data to support any particular natural remedy on its own.

“There are some data that show an association with reducing the consumption of, for example, red meat.

“The problem is that it hasn’t been studied in a large population observation or study.

“People are also on an anti-inflammatory diet, but again, that’s hard to say. Patients have changed their diet and see an advantage in this, but that is largely anecdotal.’

What to do if your doctor doesn’t take you seriously?

Don’t settle for not responding when you know something is wrong.

Don’t accept acquiescence and make sure your complaints are taken seriously. Get a second opinion if you get stuck,” Dr. hemant said.

“If your ultrasound is normal and you are still having symptoms I would say to your GP, ‘I am concerned about endometriosis, I know the imaging may be negative and I would urge you to see an endometriosis center become.’

“You can then have further tests done and seen by a doctor who is trained in endometriosis and have a laparoscopy done.

“If the pain is so severe that you have to take painkillers regularly and it affects your ability to work and enjoy your life, that needs to be addressed.

“The message is menstruation shouldn’t be so painful that you can’t function, intercourse shouldn’t be painful.”

“I don’t want people to be told you can’t help it and just move on.”