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mental load of endometriosis
iStock/Delmaine Donson
There is a lot of information on our site, in books, and across the internet about the physical aspects of endometrios, including causes, symptoms, and treatments, but the mental load of endometriosis often goes overlooked. Health Central writer Gabrielle Kassel takes on the subject and how best to deal with it in this latest article. Here is a brief synopsis of the article along with a link to the full article below.

Heather Jeffcoat, DPT

Looking to Lighten the Mental Load of Endometriosis?

Learning to tend to your emotional wellbeing can go a long way in helping you cope with endo.

Enodmetriosis (or just "endo") is defined as the growth of endometrial tissue - which normally grows only inside the uterus and is shed during each menstrual cycle - outside of the uterus. Endometriosis can bring with it chronic pain during menstruation, painful premenstrual cramps, pain with sex and penetration, bladder pain, pain with bowel movements, and it has also been associated with infertility.

With all of the various types of physical pain that come with endo, it's no wonder that the mental load of endometriosis can take its toll over time. This article takes a critical look at the causes of the pain and the associated anguish, and looks to highlight some solutions that mainstream medcine doesn't always have to offer.

The article begins:

WHEN YOU READ about the pain associated with endometriosis, it’s often a catalogue of the physical kind that ensues when endometrial cells grow outside the uterus and wreak havoc. But, as most anyone with endo can tell you, the mental and emotional spillover is real, too. “Endometriosis impacts everything from someone’s sex life to their social life,” says Shannon Chavez Qureshi, Psy.D., a psychologist and sex therapist in Beverly Hills, CA. “The frustration with getting relief can make someone feel isolated, stuck, shamed, stressed, and depressed.” Our experts show you the TLC that can help you maintain a healthy headspace.

There are a number of factors that we asses when someone comes to us for endo treatment, including their daily physical routine and habits. There are often ways to improve wellbeing just by changing up their daily routine. Some specific exercises can really help. Even just being more active in general can sometimes help break down endo related scar tissue and adhesions in the pelvic area.

From our article entitled "Physical Therapy for Endometriosis and Chronic Pelvic Pain":

Inflammation, scar tissue, and adhesions

Typically, organs and tissues in the abdomen and pelvis are slippery and have movement. Internal scar tissue can form into wide bands called adhesions, which attach to organs, muscles, and fascia, causing things to stick together and create problems such as abdominal and pelvic pain, vomiting, bloating, inability to pass gas, constipation, and painful sex.

With monthly cycles of growth and shedding, endometrial tissues can cause inflammation and the formation of adhesions. Layered on top of the monthly tissue changes, clients with endo often undergo many invasive diagnostic and treatment surgeries, including laparoscopic procedures and hysterecomies, which add even more scar tissue to the area.

And while therapy is a great place to start, it also really helps to have a support group. Don't be shy about having confidants whom you feel comfortable sharing your situation with, and don't think you are alone with your diagnosis. Communicating with others who share in your pain just might even lead to newfound ways to deal with the mental load of endometriosis.

Create an Inner Circle of Confidants

Like many chronic pain conditions, endo is invisible to the outside observer. “People with endometriosis often look fine, while dealing with a war zone inside their body,” explains Chavez. As much as you may feel tempted to keep this private issue totally to yourself, she recommends talking about your diagnosis and symptoms with your partner(s) and the people closest to you. “That way, they can be a part of your healing journey by coming to doctor appointments, helping out after surgery, or being there to support you during a bad flare-up and painful day,” she says.

We cannot stress enough how important it is to connect with health care providers who are familiar with endo. A general practioner for example might be great for dealing with common maladies, but have no specific knowledge of endo and its associated symptoms and treatments. Here at Femina PT we have a wealth of experience treating endo and a long list of testimonials to the effectiveness of our protocols.

Make Sure Your Doctor Is on The Same Page

Unfortunately, it's not uncommon for healthcare providers who do not specialize in endometriosis to minimize their patients’ symptoms, says Heather Jeffcoat, a doctor of physical therapy and author of Sex Without Pain. Indeed, one survey by the Alliance of Endometriosis found that 42% of people living with endometriosis are disbelieved, dismissed, or ignored completely by their doctors. “It takes a tremendous toll having to advocate for your health with providers,” Chavez adds. If this sounds like you, utilize The The American End of Endo Project Provider Directory or iCare Better Expert Search to find an endometriosis specialist near you.

The more you know about what's causing your pain, the better you can cope with the mental load of endometriosis. My book "Sex Without Pain" is widely recognized as an invaluable resource, and should be at the top of your list of recommended resources.

Do Some Reading on Endometriosis

Endometriosis affects roughly 10% of women, but just about every woman who comes into my office really feels like they're the only person in the world suffering,” says Iris Orbuch, M.D., an obstetrician-gynecologist in New York City who specializes in endometriosis and a co-author of Beating Endo. Reading more about endometriosis can remind you that you aren't alone, says Jeffcoat, who actually suggests starting with Dr. Orbuch’s book for coping strategies. But if memoir is more your speed, read Vagina Problems by Lara Parker, Ask Me About My Uterus by Abby Norman, or What Doesn’t Kill You by Tessa Miller.

To counteract the depression that can set in due to chronic pain, it's also important to learn techniques that can quiet the mind and put your body in a more relaxed state. We have a large number of articles that cover all aspects of endo here.

Try Meditation

One review in Annals of Behavioral Medicine found that mindfulness significantly reduced symptoms of depression and improved quality of life in those with chronic pain. “Regularly using a meditation app such as Calm or engaging in a routine practice of deep, diaphragmatic breathing can both be helpful,” says Jeffcoat. Meditation may be especially key for people who are newly diagnosed and tend to be more sensitized to the pain, according to Dr. Orbuch. “We can downregulate patients' response to pain through breathwork and meditation,” she says. Her recommendation: Commit to meditating every day at the same time for six weeks.

Click here if you would like to read the full article at Health Central, and if you find yourself struggling with the mental load of endometriosis, contact us here for an appointment at one of our Los Angeles area offices.

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My husband and I were married for 5 years and unable to have intercourse, but I never knew why. After numerous awful experiences at doctor’s offices (where many doctors told me I “just needed to relax”), a surgery that didn’t fix the problem, and a year of owning dilators that didn’t get me anywhere, someone finally referred me to Heather for Physical Therapy. I finally had answers and information from someone who knew exactly what I was dealing with!

Read more: Testimonial by M.M.

Testimonial by M.M.

A personal journey and testimonial from one of my patients:

My husband and I were married for 5 years before we were able to have intercourse due to my vaginismus. There was nothing traumatic in my past but for some reason, even though I wanted sex, I mentally avoided "that area" of my body and didn't even admit to myself that there was a problem for a long time, even though I was never able to put tampons in. Once I finally opened my eyes up to the fact that I had a problem, I had a surgery that was supposed to fix the issue.

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Heather is without exaggerating AMAZING! After years of trouble with a certain part of my body, in no time, she made everything change back to equilibrium and to what would be considered normal. She explains everything in detail and therefore gives you a better understanding of why things are the way they are, and how you can work towards turning things around. I would highly recommend Heather for any type of Physical Therapy. She has created her own "Method/Therapy" through years of studying (with some of the greatest practitioners), practice and breaking down the issues of her past patients, enabling her to fine tune her own system. I'm so thankful to have found her, and I'm especially grateful for the quick recovery I've achieved, after years of distress. If you cannot afford her, I recommend you purchase her book. Although it may not be Heather in person, it can still help you to get on the right path to recovery!

-- Alexandra B., 5/20/2015 via Yelp!

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My last appointment with Heather was over 6 years ago but I still think of her every day. I don’t take for granted that I can easily get out of bed, care for my two active and busy young boys, run, play tennis, clean my house, or sit at a desk for several hours at a time. None of these tasks were easy for me before meeting Heather. Eight years ago my car was struck from behind by a tractor trailer that was estimated to have been speeding. I spent 3 years working with different PTs and Drs trying to heal and move on with my life. When I became pregnant and the hormone relaxin that “relaxes” all the joints of the body and the additional weight gain erased all my progress and I was suddenly in a lot of pain again. My OB sent me to Heather for one last try.

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I went to Heather after the birth of my third child. It was lucky, really, that I was referred to her, because my doctor had referred me to a surgeon for a possible hysterectomy or pelvic wall rebuild. Thankfully, I went to Heather before undergoing either surgery, she was able to fix the problem. She has studied extensively in women's health--even written a book about it--and was able to diagnose my problem, suggest a course of treatment (6 weeks), and then follow through with said treatment. By the end, as she said, I was as good as gold. Boy, was it worth it! Though uncomfortable to talk about, much less write about, it is worth getting the word out there. If you have painful intercourse, especially after birth or other trauma, the treatment may be as simple as Physical Therapy (with Heather, of course). I highly recommend her.

-- Fritzette H., 3/24/16 via Yelp!

Testimonial by M.N., age 28

A personal journey and testimonial from one of my patients:

I was diagnosed with vaginismus 4 years ago. I never heard of such medical condition until after I got married. At first my husband and I didn't know what to do, we didn't know what the issues were or how to overcome it. Being born and raised in Armenia and being Christian I wasn't that open about talking to sex with others and so it wasn't easy to seek help. But eventually I went to an Ob-Gyn and luckily she knew about the medical condition (not many doctors know). She referred me to a physical therapist and I couldn't believe it and thought it's something I can handle myself. I ordered a kit from vaginismus.com and started practicing with dilators. There was some small progress but wasn't much helpful.

Read more: Testimonial by M.N., age 28

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