Part 2: as seen on https://www.theendometriosissummit.com/blog
I thought this would be a perfect follow up to the first blog about relationships and Endometriosis. A real story about a real woman and her life with Endometriosis. This is how it affects her and her relationship. How courageous for KD to share this story with us. I asked her some personal questions about her diagnosis, surgeries, emotions and of course relationship and sex with Endometriosis. First a little about her:
“I’m 43 years old. I was born in Queens NY and raised in New Jersey. I was diagnosed at 28 years old. Before my diagnosis I was a behavior therapist for autistic children and teens. I loved every second of that job. I loved going to work every day. Unfortunately, the job was a bit too physical and I had to resign 3 months after my Lupron shot.
I was bedridden for 6 months following my last shot of Lupron. But I eventually made it back to being a per diem case worker in the autism field again.
Unfortunately, around 2013, I was deemed permanently disabled because of numerous other conditions.
It’s a life changing experience. Before this, I was a very active person. I went hiking weekly, traveled, had numerous social circles.
Now I’m trying to manage my new life. I use Photography as an outlet now. Music, my dog, walking, and Photography are my saviors. I still love being out in nature. It brings me peace. I just wish my body would allow me to live life again and not just survive it. But I’m working on it.
When did you know something was not right?
I knew that something was not right in high school because I used to throw up from my period every month. I would get fevers. The pain in my lower back and down my legs was so bad, I would often crawl around my house.
When were you diagnosed?
I was not diagnosed until I was 28 years old. I was tested for Chron’s Disease, had acolonoscopy, was told I was just anxious, etc.
How many surgeries have you undergone?
I have had a total of 5 surgeries. My last surgery was less than 2 years after a total hysterectomy. I was recommended to the CEC in Georgia because my case was too complicated. I had my hysterectomy with a regular gynecologist. It wasn’t until I joined social media that I even found out about excision. All my previous surgeries had been just ablation. My gynecologist kept this missing my pain after my hysterectomy, so I had to start advocating for myself.
When was your first surgery?
My first surgery was January 2005.
Are you in a relationship?
Yes. I’m on my second marriage.
Were you in a relationship when diagnosed?
I was less than a year into my first marriage when I was diagnosed.
How did you explain to your partner?
Honestly, I didn’t really. He was pretty active in coming to doctor appointments with me. I was not aware or knowledgeable enough about how severe Endometriosis was. For some reason, I didn’t think it was a big deal at the time. I was just happy to finally have a diagnosis.
Did your diagnosis change your relationship?
Absolutely! My first marriage ended because I couldn’t have children because of Endometriosis.
We tried for years with no luck. It really put a strain on us. I wanted to adopt, he didn’t. It got more complicated than that. I remarried several years later. And unfortunately, the worst times of my Endo diagnosis happened during my second marriage. I was recommended to have a total hysterectomy by a regular gynecologist. After my hysterectomy, I was still in constant pain. I was back and forth to the ER almost every weekend for 6 months. My bladder and bowel issues were so much worse. It was during a 12-hour visit to the ER that we discovered that I had ovarian remnant syndrome. I was devastated, realizing I had a hysterectomy for no reason. I then began to realize that I needed to advocate for myself. I went to an Endometriosis specialist by Rutgers University. He told me that my case was too complicated and didn’t feel comfortable performing the surgery. I appreciated his honesty so much. My last surgery was 8 hours in Georgia. My husband came with me. It took a toll on both of us mentally. I’ve had severe PTSD ever since. Sex is now extremely painful. I’m constantly terrified of ripping or harming my vaginal cuff since I had to have my first one completely removed and repaired. Living in fear is not exactly healthy for one’s sex life. We manage in our own ways. But Endometriosis has definitely affected both of my marriages and not in a good way.
What changes have you made as a couple to overcome pelvic pain?
I go to pelvic floor physical therapy every other week. My husband has been extremely patient and understanding and never forces sex on me. We are intimate in other ways now. But I hope to one day be able to not be traumatized enough to get my “regular” sex life back. I’ve also just started psychotherapy to help deal with my PTSD better.
Do you ever feel guilty or you have let your partner down?
Absolutely. All day every day. I never not feel guilty. It all adds to the trauma. It’s an endless cycle. My second husband did not want kids, so that guilt is not there, thankfully. But I feel guilty all the time for my many health problems. I feel like a burden. I feel like he deserves a healthy wife who can participate in all the things he wants to do. I have many issues because of a drug I was given for Endometriosis in 2007 called Lupron. It pretty much destroyed my immune system. I lost my career and I made pretty decent money. It’s hard living on one salary now. I feel it puts a ton of pressure on my husband and I constantly feel that is my fault. Endometriosis bleeds into every aspect of your life. It affects intimacy, friendships, income, ability to participate in daily activities. I constantly think my husband would have a better, stress free life if only he had a healthy wife.