‘The Pain Was Debilitating’: Brave Mum Opens Up About Struggles With Endometriosis

**TRIGGER WARNING: This story is of a sensitive and emotional nature***

This brave mum has opened up about her journey suffering with endometriosis. Unfortunately, this led to miscarriages, IVF and eventually having a hysterectomy. But her spirit hasn’t been shaken.

Emily, who is a Healthy Mummy community member, has opened up about her struggles with endometriosis. 

Emily. Source: Supplied

Emily’s Struggle With Endometriosis

“2 years ago on Mother’s Day, I was undergoing surgery for stage four endometriosis and adenomyosis,” says Emily.

“I was 32. I had always known that a total hysterectomy, (where everything but my ovaries were removed) was in my future. But I didn’t expect it to come when I was quite so young.”

Endometriosis is a condition that affects one in ten women. The endometrial tissue, similar to that within the lining of the uterus, grows externally to the uterus. It can cause debilitating pain and infertility among other symptoms. Adenomyosis is a condition that causes cells that normally form a lining on the inside of the uterus, also grow in the muscle wall of the uterus.

day after surgery
Emily the day after surgery. Source: Supplied

“I had always had trouble with my periods. From the moment they started, they were heavy and painful,” says Emily.

“I would regularly soak through pads and clothing. I’d soak a doubled-up pad and tampon within an hour. The pain was bad too. I remember being unable to walk with pain shooting down my leg and up my spine.”

Emily’s mum took her to see a gynaecologist when she was 15, and was put on the pill. When she was 21 she fell pregnant and she says the pain was “unspeakable”.

“I remember sitting on the couch wailing, thinking I was going to die,” she says.

“That afternoon I was having emergency surgery for an ectopic pregnancy that ruptured on the operating table. The doctor that saved my life said I lost an immense amount of blood extremely quickly. This is when I was also diagnosed with stage four endometriosis.”

Emily was sent to a specialist endometriosis gynaecologist and they found adhesions on her bowel. They also discovered that her ovaries were tied in knots.

“I even had adhesions and endometriosis tissue on my lungs,” she says.

Emily suffered with three miscarriages and then she and her partner decided to try IVF. Their daughter was conceived during her first cycle of IVF just before Emily’s 23rd birthday.

After her daughter’s birth, sadly Emily suffered a second ruptured ectopic pregnancy.

“The endometriosis pain settled for a while, until I suffered a second ruptured ectopic pregnancy. We decided to try IVF again once my body had healed. Now with no fallopian tubes, IVF was the only option. My son was born in 2010,” says Emily.

In an FAQ set up to help answer people’s questions, UMC explained that the error was discovered when a new procedure was introduced at the medical centre.
Source: iStock

And that wasn’t the end of it, Emily says her period pain didn’t ease, and she would pass huge blood clots and bleed for months at a time.

Emily says: “The pain was debilitating. I couldn’t walk, I couldn’t eat, I couldn’t sleep, I couldn’t move away from the bathroom.”

The mum of two had a Mirena IUD fitted, but it moved and perforated her uterus so it had to be removed surgically.

“At this point, I was needing blood transfusions just to keep my iron levels up. I’d regularly pass out from pain and low blood pressure.”

After this, Emily met her current fiancé and they made the decision to try an endometrial ablation,which is a surgical procedure done to destroy or remove the lining of the uterus.

“You no longer have periods and can no longer have children,” she says. “The ablation helped a good deal, however about two years later I began to have symptoms again.

“It turned out that a tiny spot was missed during the ablation. This had allowed my regular menstrual blood to bleed into my abdominal cavity, as it couldn’t escape the usual way. It was debilitating. I couldn’t work, I was pale as a sheet all the time.”

Surgeons performing surgery in operating Theater.
Source: iStock

Doctors suggested to Emily that she should have a total hysterectomy.

Emily says: “Making this decision wasn’t easy, I still mourn my lost fertility. I still wonder what mine and my fiancé’s child would look like.

“The surgery itself wasn’t easy either. I developed a collapsed lung and pneumonia three days after surgery. (They suspect this was due to the endometrial growths on my lung). I was not only recovering from major abdominal surgery, but major lung disease at the same time. I was sick for months.”

But Emily says slowly her health returned and she may need to have another surgery to have her ovaries removed in the future, which would put her into medical menopause.

“Endometriosis is an horrendous condition and is different for everyone who experiences it,” Emily says.

“Do you have pain going to the toilet, or pain during or after sex? Do you have an irritable bowel? Are you having trouble conceiving?

“ALL of these are symptoms for endometriosis. Unfortunately, the only official way to be diagnosed is with surgery. There’s no cure, however there are some treatments which can help your symptoms.”

Oh my goodness Emily, you poor thing. It really seems like you’ve had such an uphill battle with your endometriosis. We’re so glad that you’re okay and are feeling better.

Endometriosis: What Is It And How Does It Affect Fertility?

Every month a woman creates a new endometrial lining in her uterus, which, if she does not fall pregnant in that month, is shed during menstruation.

However, for 10 per cent of women, they also make endometrial tissue OUTSIDE of the uterus, says Endometriosis Australia. This tissue is commonly found in the ovary, but it is can also be found in fallopian tubes, cervix, vagina, bowel, and bladder.

endometriosis and fertility

Like the endometrial lining of the uterus, this tissue responds to the monthly hormonal fluctuations, and it builds up and sheds. But unlike the tissue in the uterus, which are expelled monthly, it has no where to go.

This results in pain. Lots of pain. The endometrial tissue forms adhesion’s that may look like a spiderweb, connecting organs internally that usually have space between them. The tissue causes inflammation, scar tissue and cysts.

If you have any concerns, talk to your GP.

The Most common symptoms associated with endometriosis are:

  • Painful periods
  • Pain before period
  • Pain during ovulation
  • Lower back pain
  • Pain during and after sex
  • Pain with bowel movements
  • Pain when urinating
  • Abnormal bleeding is linked as well, such as super heavy periods, or spotting. Some women however, do not experience any of these symptoms and only find out when they unsuccessfully try to conceive a baby.

20-50 Percent Of Issues With Fertility May Be Caused By Endometriosis

This occurs for a number of reasons. The adhesion’s may block tubes; it distorts the proper anatomy of the pelvic organs and may interfere with egg development. With the way the egg moves down the tubes, or with implantation. This could be due to scar tissue, or it could be due to the endometrium itself not developing correctly anymore.

The only way to get a definitive diagnosis is through a laparoscopy. When the ablations are removed the chances of conception greatly improve.

endometriosis and fertility

What Causes Endometriosis?

There is no single reason why endometriosis occurs. So, finding out the reason why it is occurring in each individual may take some time, but by exploring the reasons, you may help prevent recurrence. Most common reasons are issues with anatomy, genetics, hormonal imbalance, exposure to environmental toxins, and autoimmunity or dysfunctional immune response.

Treatment Options For Endometriosis

The main medical treatments are aimed at inhibiting growths, but to do this, they cease periods, thus ceasing ovulation, and fertility is not improved. Most symptoms return when stopping medications when you undertake this treatment option.

Ablation or removal of adhesion’s is an effective treatment for stage I and II endometriosis.

There are very little natural based medicines that are “evidence based” treatments for endometriosis. Acupuncture and TCM and Mediterranean style anti-inflammatory diet may help.

Traditional herbal medicine may help reduce symptoms such as cramping and inflammation and help balance hormones.

For more information on endometriosis, click here.