Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Misslliss 04/08/2014

Hi All,

I am finally back and posting after a super hectic week (unrelated to endo luckily). Long story short my boyfriend had a quick surgery last week which ended with tons of complications and spending almost 3 days in the hospital. But, a quick update on me, I am having mirena inserted this afternoon and am really feeling hopeful. I am hoping that the pain is not too bad, but I took the rest of the afternoon of work just incase I am in pain.

Anyway, the point of this may sound kind of strange. But, I am also a graduate student in a Master of Social Work Program and have a final research paper coming up. This particular course is social work in healthcare settings and I was to choose a topic related to health/health care. My topic is social work with endo and infertility. If any of you would be willing to share, if you were ever assigned a social worker in the hospital, referred to one by your obgyn, or if you sought out therapy or counseling of any kind related to your endo and/or infertility. if i use any responses in my paper I will keep everything completely anonymous. I am mostly just curious to see if anybody has ever recommended this to patients. None of my doctors have ever suggested counseling or therapy of any kind, which as a SW student is kind of disheartening.

thanks to any of you willing to share. I would be happy to share my e-mail address if there are any concerns/if i include any info and anybody wants a copy of the paper.

love you all :)
Melissa

PoisonedApple 04/08/2014

Usually when I've heard of someone being suggested counseling/therapy for pelvic pain it was prior to their endo diagnosis. At the Endo March there were a couple of speakers that said they were told their pain was all "in their head" and to seek out mental health care instead of gyn care.

I never had this happen to me, but I know it's a common experience.

It would be interesting if therapy/counseling were offered to endo patients to help with all of the rough times. This would be, of course, AFTER someone was actually diagnosed with endometriosis. Not simply a gyn brushing off endo as "imaginary" pain, or "overreacting."

hotchocolate 04/08/2014

I did begin counseling after being diagnosed, but it was completely on my own accord. Actually a friend recommended me to her therapist when she saw what a hard time I was having with the diagnosis/pain. Later, however, my gyn (not knowing I was already seeing a therapist) listed it as an option. When I asked her what else I could do to manage the pain, she rattled off "Pain doc, acupuncture, nutritionist, therapist, etc.)

In my opinion, everyone could use a little therapy. :)

VallyWillis27 04/08/2014

I saw a social worker after diagnosis because I was going through a lot with leaving my job, leaving my nursing program due to endo. But honestly, I found it to be useless (no offense). For me once I get into "lets take action mode" I don't really want sit and talk about it, I want to research it and figure out my best approach.

I did try to get into Cognitive behavioral therapy because there is research that it can help people with chronic pain. But the referrals I got from the psychiatrist at the pain clinic I go to gave me 2 referrals for people who didn't take insurance. Um, I was a poor student, paying out of pocket really wasn't a choice.
I gave up after that because I had other things I wanted to concentrate on. But I still have ruled out CBT, just haven't gotten around to looking for one again.

Apple, at the pain clinic I go to all of the patients meet with the psychiatrist to make sure our chronic pain isn't turning into something that is really affecting our mental health. But I know, a lot of places don't offer services like this.

Marlaina816 04/09/2014

I did not/was not recommended a social worker by my hospital, pcp or obgyn. It would have been nice if they did. I have no insurance and have had to apply for free care etc (incredibly long story) but like I said it would have been nice and would have lifted some of the burden off me having someone to help me navigate with no insurance, trying to help me find and keep me on affordable meds, find other docs, alternative therapies etc.

Thankfully due to my past stage 4 breast cancer history I knew quite a few of the ropes of dealing with things and how to work through certain channels etc. But have wondered how I would have done though this without that experience or how other women who don't have a lot of medical knowledge or how to deal with navigating this system would do without the help or offerings of a social worker.

endowife 04/10/2014

I started to see a sports therapist after watching an amazing documentary on boxing. It turns out that boxers that do really well have the best sports psychologists because who wants to walk into a boxing ring when they know they are just going to get hurt?
I was in so much chronic pain that I started to see the sports therapist. I then got diagnosed with endo, and also got diagnosed with infertility. I had 2 laps and 2 IVF cycles to get pregnant. I'm happy to participate in your study, please private message me if that sounds like an appropriate fit with your research.

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