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10 Important Warning Signs of Endometriosis

Endometriosis is a condition that affects 1 in 10 women with a uterus, and even some without one.

Despite how common it is, it often goes undiagnosed and ignored, by both women themselves and medical professionals, for years. That’s why it’s important to recognize the warning signs of endometriosis, document your symptoms and seek the right type of care. Endometriosis can cause chronic, debilitating pain and no one should have to live that way.

Here are some important warning signs of endometriosis to watch out for.

10 Important Warning Signs of Endometriosis — *This post contains affiliate and/or paid links which means that if you click on one of these links and buy a product, I may earn a small commission at no additional cost to you. Rest assured that I only recommend products that I love from companies that I trust. Furthermore, I am not a medical professional and nothing in this post should be taken as medical advice. I am simply a mother who has been there and lived to tell the tale.

1. Severe Cramping

Since endometriosis is associated with a woman’s menstrual cycle, severe cramping is one of the most common symptoms. Most women with endometriosis experience symptoms starting with their very first period, so it’s hard to know what is considered normal menstrual cramps if you’ve never had anything but the “severe” ones.

Menstrual cramps are unpleasant no matter what, but here are a few warning signs that it could be endometriosis:

- Cramping so bad that extra-strength painkillers don’t take the pain away
- Cramps accompanied by nausea, vomiting or dizziness
- Cramping pain that radiates from the pelvis to the thighs, lower back and buttocks.
- Cramps that begin before your period and last longer than a week.

2. Abnormal Bleeding

Again, hard to know what’s considered normal vs. abnormal, as some women are just prone to heavy periods. But endometriosis isn’t synonymous with just a heavy flow.

Some things to watch out for when it comes to menstrual bleeding with endometriosis:

- A heavier than normal menstrual flow
- A lighter than normal menstrual flow
- Spotting instead of a regular period
- Spotting or bleeding in between regular periods
- Dark brown blood or spotting (that looks like old blood)
- Menstrual blood containing lots of large clots

If blood is not being properly expelled each month, women can experience cases of abnormal bleeding. But any of these can also signal a lot of different conditions, and not just endometriosis. Any menstrual changes should always be documented and discussed with your doctor. Changes to your menstrual cycle are big red flags that something is going on inside your body.

9 Reasons Why Mothers Don't Speak Up About Chronic Pain — .

3. Pelvic Pain

Pelvic pain is one of the first symptoms that might cause a woman to seek help from a medical professional. For women with endometriosis, the pelvic pain might be felt during ovulation, while on their period, or they may experience the pain chronically. Endometriosis is known to be one of the most excruciatingly painful conditions that exists, so debilitating pelvic pain is a big warning sign.

Where and when a woman experiences pelvic pain can be different, as it all depends on where the endometrial tissue is growing. Some women with severe endometriosis don’t experience any pelvic pain, while others might have only a few spots, but feel a lot of pain. The endometrial tissue can also form adhesions, which only cause pain during certain activities like sitting, running, bending over or squatting.

4. Painful Bowel Movements or Urination

The uterus sits very close to other internal organs, including the bladder, bowel, intestines and rectum. This means that there is always a chance of endometrial tissue growing on these organs or forming adhesions around them. If that happens, going to the bathroom can be extremely painful. The pain can range from slight pressure as the bladder increases, to full out screaming pain during a bowel movement. It might feel almost impossible to bear down while eliminating, so avoiding constipation is key. On the other hand, some women experience diarrhea or loose stools during their period, but it’s still just as painful to go.

Strengthen Your Pelvic Floor Muscles with Perifit — .

5. Painful Intercourse

If the mere idea of intercourse makes you cringe in pain, it could be a warning sign of endometriosis. Endometriosis can cause pain during intercourse, even when a women is not currently on her period or experiencing any pain. This is mostly due to any adhesions that may have formed. During intercourse, we use our pelvic floor muscles to relax and contract. But if they are compromised by endometrial tissue or adhesions, this can be extremely painful to do.

Orgasms can also cause a lot of pain in women with endometriosis, which is a sad fact, since they should be able to enjoy them as much as anyone else. But again, the contracting of those pelvic floor muscles can be restricted and cause pain, both in the moment, as well as long afterwards.

6. Lower Back, Leg or Hip Pain

Endometriosis is regularly associated with pelvic pain, but it commonly causes pain in the lower back, stomach, legs or hips as well. Endometrial tissue and adhesions can grow practically anywhere, even as far up as the diaphragm and lungs. But endometrial tissue growing on the pelvic organs can affect the function of our pelvic floor muscles, abdominal muscles and hip flexors. These muscles control our lower back, stomach, hip and leg movements, essentially they are our “core” muscles. If you’re in pain simply from trying to move around like a normal person, it could signal something such as endometriosis.

Battling Endometriosis While Suffering From Postpartum Depression — .

7. Inflammation

Endometriosis and inflammation go hand in hand. The lining of the uterus essentially becomes inflamed each month, and the inflammation recedes once that lining is shed. Therefore, the pain of endometriosis is caused by inflammation from the endometrial tissue growing outside the uterus that is unable to be shed.

With endometriosis, women may experience inflammation in other parts of their body as well. This can include pain or swelling in their hands, feet or joints. Many women also develop symptoms of other inflammatory autoimmune disorders such as chronic fatigue syndrome, thyroid problems, rheumatoid arthritis, vitiligo, lupus and more.

8. Excessive Bloating

“Endo belly“ as it’s lovingly called, is a major warning sign of endometriosis. It refers to the excessive bloating that many women with endometriosis experience during a flare up. If we go back to the last point, this bloating is partly due to the inflammation of the endometrial tissue outside the uterus, and the restriction on the digestive system caused by adhesions. While bloating is common for many women during their periods, endo belly can make a women look 6 months pregnant in a matter of just a few hours.

Warning Signs Your Body is Screaming for a Detox — .

9. Infertility

Yes, infertility is often associated with endometriosis, and it’s perhaps the most common reason woman actually get a proper diagnosis. But endometriosis doesn’t always cause infertility, so just because you’ve been able to have children doesn’t instantly mean you don’t have it. In fact, I personally didn’t start to experience symptoms of endometriosis myself until after the birth of my second child, and I was still able to conceive a third child without any intervention. It all depends on where the endometrial tissue is growing and which organs are affected. But if you are suffering from infertility, endometriosis could definitely be the culprit.

10. Fatigue

Of all the warning signs of endometriosis, I saved this one for last because it seems to have the least impact. What I mean by that is – who ISN’T tired? Endometriosis, like many inflammatory diseases, causes severe fatigue. And not just during flare ups, but all the time. It’s exhausting fighting pain and inflammation on a regular basis. If you’re experiencing extreme bouts of fatigue in conjunction with any of these other symptoms, you could be suffering from endometriosis.

Hysterectomy: A Chance at Freedom from Endometriosis — .

+ Bonus Warning Sign

Another huge red flag that it might be endometriosis is if you’re experiencing excruciating pelvic pain and yet nothing shows up on any diagnostic imaging test. As a personal testament, I can’t count how many times I’ve gone to the ER in an amount of pain way beyond my tolerance level (and I gave birth three times without drugs) only to be told they didn’t find anything wrong with me. It is extremely frustrating and almost dehumanizing.

Suspect you have endometriosis?

The unfortunate news for women who experience these warning signs of endometriosis is that the only way to get a definite diagnosis is via laparoscopy. I lost my uterus to stage IV endometriosis and yet nothing showed up on an ultrasound, CT Scan or MRI even as recent as a month prior to my surgery. Many women will undergo a hysterectomy in an attempt to treat the endometriosis, but it’s not always the best course of treatment as endometrial tissue can continue to grow, even without a uterus.

Instead, a technique called excision is the preferred method for treating endometriosis, however only a handful of surgeons currently perform it successfully around the world. It’s a meticulous surgery that requires the cutting away of endometrial tissue and patients often require more than one surgery to get it all. Sometimes a hysterectomy needs to be performed in addition to excision of endometrial tissue, depending on how widespread the disease is.

The Tormented Life of a Mother Suffering with Endometriosis — .

Since the month of March is known as Endometriosis Awareness Month, it’s especially important to take some time to raise awareness and education about this excruciating condition. Sadly, the women with this condition will be faced with having to fight for proper medical treatment and will likely be turned away from help several times before finding it. It is an issue that is near and dear to my heart and my hope is to save as many women from having to go through the same traumatic ordeal that I did.

Additional Resources:

- Endometriosis.org – global platform for all things endo
- EndoFound.org – Endometriosis Foundation of America
- Endometriosis.net– expert articles and peer support
- WebMD Endometriosis Health Center
- Nancy’s Nook Endometriosis Education Facebook Group
- Endometriosis Support Group on Facebook
- Hystersisters.com – hysterectomy support

Battling Endometriosis while Suffering From Postpartum Depression

Endometriosis is a condition that plagues nearly 10% of women but is often misdiagnosed or not diagnosed at all.

Like postpartum depression, endometriosis is something that isn’t talked about enough. It causes a considerable amount of pain but so many women learn to live with it and don’t seek the proper treatment. And those who do seek help, are often told it’s nothing, because endometriosis doesn’t show up on ultrasounds or x-rays or ct scans.

While there is no link between endometriosis and postpartum depression, they do have a lot in common:

They are affected by hormones
They affect women in their childbearing years
They are under-diagnosed conditions
They are invisible diseases
They are stigmatized and need more awareness

Every women’s struggle with endometriosis is different, just like postpartum depression. Here is MY story…

It was a mere coincidence that both my endometriosis and postpartum depression were diagnosed at the same time, because the two conditions are not exactly linked to each other. But ever since that diagnosis, they have been intertwined throughout my journey of highs and lows.

It all began when my daughter was 5 months old. Actually, the postpartum depression symptoms had been going on for a few months already but I was still in denial.

We took a family trip to Disney World (both kids were still free to get in, so we thought we’d take advantage)! Despite exclusively breastfeeding, I got my first postpartum period – right there in the Magic Kingdom.

I was disappointed and annoyed but what else could I do, on this trip of a lifetime, but suck it up and waddle around in blood-soaked pants for the rest of the day?

The next day, we planned to go to Cocoa Beach. When you’re from the Canadian Prairies, trips to the ocean are few and far between, so I was definitely NOT missing out on it. I bought the biggest box of tampons I could find and tried my best to enjoy the day.

But the cramping was worse than labor pains and the bleeding was relentless.

I made it through that vacation but the following month was even worse. I probably wouldn’t have said anything to my doctor, except that it happened to fall on the same day as my daughter’s 6 month checkup.

I was lucky enough to have a great doctor with whom I already had a close relationship, and it was in that appointment that I broke down crying – overcome by the pain of the menstrual cramps and the dark place my mind had been in for the last 6 months.

Based solely on my symptoms, he figured it was endometriosis that was causing the pain and heavy bleeding. It was the first time I had ever heard the word. When he told me that it can cause infertility, I actually felt relieved because I had zero desire to have another baby. He gave me some samples of birth control pills and advised me to take them continuously in an effort to “skip” my periods.

Then we discussed the postpartum depression and came up with a treatment plan.

Prenatal & Postpartum Depression - Vanessa's Story — .

I was supposed to follow up with him in a few months to see how things were going. But by then, we had relocated for my husband’s job – a 9 hour drive away.

For a while, things were alright…

My mind was distracted by the move and I remembered to take my birth control pills everyday, avoiding the painful cramping that accompanied my periods.

Until I ran out of samples.

Trying to find a good doctor in a new town where I didn’t know anyone was tougher than I thought. So I chose to suffer instead. I loaded up on painkillers and wore adult diapers to soak up the extreme amounts of blood and just dealt with it.

With each month that passed, the pain got worse and worse. The cramping started earlier and lasted longer until I was only pain-free for one week each month. I turned to essential oils for help with the pain, but even their magic wasn’t strong enough.

The chronic pelvic pain exacerbated my postpartum depression symptoms.

I felt defeated by the pain. I didn’t feel like being strong or fighting through the pain – I hoped and prayed it would just kill me. I thought about how my daughter might someday experience this kind of pain, and I felt responsible for that. I felt like all I did was inflict pain on those around me, because I was also in pain. And I was certain that everyone would be happier, myself included, if I was just gone.

When my year of maternity leave was over, things got better.

I found a job that I loved and began to make friends. The daycare we chose for the kids was wonderful and they settled into it without any problems. I appreciated my children more because I cherished the short amount of time we had together each day instead of dreading the long hours of nothingness.

Finally, I was happy! I pushed through the endometriosis pain every month because I didn’t want anything to destroy my happiness.

But after a year of being happy and ignoring the pain – the pain pushed back.

I couldn’t ignore it anymore and eventually wound up in the emergency room. Much to everyone’s surprise – I was pregnant! I guess endometriosis doesn’t always cause infertility…

The anxiety began almost immediately. I didn’t want to go through another HG pregnancy and I definitely worried about dealing with the postpartum depression all over again. Plus we had just moved again, and hadn’t even bought a house yet.

How to Prepare for Another Baby after Postpartum Depression — .

Despite the exciting news, the pain was still there… worse even.

The doctors suspected a possible ectopic pregnancy and rushed me into emergency surgery.

When I woke up, I had mixed feelings about losing the baby. Part of me was relieved to avoid another tough pregnancy, but another part of me felt disappointed that I didn’t get another chance to make things right.

The next day, I found out I was still pregnant. The pregnancy was a healthy one, and there was nothing they could tell me about the endometriosis because they didn’t want to do anything to disturb the pregnancy.

And so I had my third child. I suffered from the worst case of hyperemesis gravidarum of all three pregnancies, but for a while, I didn’t have to worry about the menstrual pain. This time I did everything in my power to prepare myself for postpartum depression again but thankfully was spared from it. I was given a second chance! I immediately felt a bond with this baby and she made our family complete.

I had a good, solid 8 months of bliss with my happy baby before my first postpartum period arrived.

And, in true dream-crushing fashion, it came back on Christmas Eve so I spent most of that night hopped up on painkillers and hovering around the bathroom door in order to change my tampon every 30 minutes.

After another steady 8 months of pill popping, I missed another period. Oh no, not another pregnancy. It can’t be. I can’t do it again. But the tests were all negative…

My menstrual cycle finally had a nervous breakdown.

It would skip months for no reason and then come every other week. The pelvic pain got worse and it was no longer limited to my menstrual cycle – it was there 24/7. I ended up in the emergency room regularly looking for something to help with the pain. Nothing ever showed up on any of the tests, and I’m certain everyone thought I was a hypochondriac. Even though I was in an intense amount of pain, I started to wonder if they were right.

The pain triggered the postpartum depression again.

It didn’t help that I was now a stay-at-home-mom, living in a city with no friends or relatives to help me out. Between the darkness of postpartum depression and the pain of endometriosis, life was very bleak for nearly a full year.

I finally met with a specialist.

He instantly validated everything I was feeling and scheduled me for a diagnostic laparoscopy to find out what was going on inside of me. Since he wasn’t sure what he would find, he asked me to sign a form that stated he could perform a hysterectomy if he deemed it medically necessary. This way, I wouldn’t have to undergo two separate surgeries if I did need one.

We discussed the fact that a hysterectomy would be the worst-case scenario, and I signed the form without hesitation.

In the 6 weeks leading up to my surgery date, I bled continuously. I should have known then, that more was wrong under the surface than I wanted to admit. If I had, perhaps I would have been more prepared for what was ahead.

The surgery was supposed to be a laparoscopic day surgery on a Friday. My husband, kids and I made the 2 hour drive into the city, expecting to stay with family for the weekend and be back home by Monday.

But when I woke up from the surgery, I was told I would not be going home that day.

My doctor came in to see me, head hung, disappointment in his eyes. He rested his hand on mine and told me that this was the first time he’s ever had to convert from a laparoscopic surgery to an abdominal incision (minimally invasive surgery was his specialty).

And then he filled me in on what happened in surgery.

He had to remove my uterus, cervix, fallopian tubes, and left ovary. He left the right ovary so that I would not go into menopause but everything else was stuck together with adhesions and needed to go. My reproductive organs were attached to the pelvic wall, bladder and bowels which he successfully separated, but there would be scar tissue remaining. The adhesions had re-routed my blood vessels and so he cut into one while attempting to perform the hysterectomy, causing me to lose nearly 4 units of blood and require a transfusion.

It was the “worst case scenario,” and I felt completely blindsided by what had just happened.

I ended up staying in the hospital for 5 days. Losing so much blood left me feeling weak and dizzy and moving around was almost impossible. Once I did get home to my own bed, I couldn’t leave. Walking up and down stairs was difficult and living in a 4 level split meant I was practically bedridden. Long after the scar healed, the pain inside my pelvis was excruciating. I was told to expect to be out of commission for a full 6 weeks but it took more like 8.

Dealing with the sudden loss of my uterus was difficult. Although I knew I didn’t want to have more children, I liked knowing that it was an option. I spent a lot of time thinking about my pregnancies and how the place where I grew my children and felt them move and kick was no longer there.

But once I recovered from the surgery, the constant pelvic pain that plagued me for years was finally gone. It was hard to believe that it was no longer there, I kept poking at it to see if it hurt but no – no more pain! And I never had to wear another giant tampon or adult diaper ever again.

Most days I forget that I no longer have a uterus. I still get some symptoms of PMS when my lonely ovary ovulates but it’s nearly impossible to track it without a menstrual cycle. The fluctuating hormones do still affect my postpartum depression symptoms and I have to take extra care of myself on those days, but otherwise, it’s no longer triggered by constant pain.

I’ve been told that a hysterectomy is not a cure for endometriosis and there is still a chance that the endometrial tissue could grow back.

Postpartum Depression Resources in Canada 1 — .

So while my battle with endometriosis, as well as my battle with postpartum depression, is over for now – they have changed who I am as a person.

They have both taken things away from me that I can never get back. They have killed a part of me inside and remain there, dormant, waiting for another opportunity to strike. I will do my best to take care of myself, to help others who are suffering, and to raise awareness about these two important issues, so that if and when they ever do decide to rear their ugly heads again – I will be ready to fight back.