Endometriosis & Fibromyalgia ~ An Interview

In my article What You Need To Know About Endometriosis, I give you a background on endometriosis. Click the link to learn more about what the condition is. This article is an interview with a Fibromyalgia Warrior, Jennifer. She answers questions so readers can see what it is like to live with Endometriosis and Fibromyalgia. She will also give you insight into her tips on how she manages her co-morbid conditions.

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Name and Age:

Jennifer Coleman, 40

When were you diagnosed with Fibromyalgia?

March 2018

When were you diagnosed with Endometriosis?

I was diagnosed with endo in October 2008, but it was not a surprise. My periods began when I was 11, and were extremely heavy and painful. I went on the birth control pill at age 11 due to their fierceness.

Which diagnosis came first?

Endo.

Do you have any other diagnosis or conditions? If so, what are they and were they diagnosed before or after the Fibro and Endo?

I was diagnosed with Interstitial Cystitis (IC) in August 2018. I’ve had some TMJ/teeth grinding issues and migraines off and on since I was a teen.

What are some of the symptoms that you experience? 

Endo: I had a partial hysterectomy in 2017 so I no longer have periods, but since I still have my ovaries, I can feel a very strong cycle and had to resume the birth control pill post-op.

Fibro: Aches and pains in the 18 fibro tender points, as well as referred pain. My wrists hurt when I drive my car a lot of days. I was having severe neck pain, which is gone for the moment (myofascial release/MFR, heat, a scarf and CBD cream help greatly) and in place I’m having knee, back and hip pain. MRF helps those too, and I’m about to do another round of PT, which I respond well to. The stronger I am, the better I feel. Once upon a time I could do a killer yoga headstand!

Also, fibro fog, fatigue and sleep difficulties.

IC: If I don’t drink enough water I feel IC pain (vaginal/pelvic pain).

If not already stated above, was diagnosis a long road for you?  Please tell us a little about the struggle to figure out “what was wrong.”

When my postpartum menstrual cycles returned, when my second/final child was nine months old, they were heavy and long. I tried many forms of birth control, with the hope of either calming or stopping them. After over a year of trying, my OBGYN suggested that I had adenomyosis, which is endo on the uterus. The only way to be 100% sure, and also to treat it, is to perform a partial hysterectomy. I went into my surgery feeling that it was the right decision either way. Adenomyosis was indeed found.

Complications

Terribly, unfortunately, my bladder was injured during my hysterectomy. I’d never been prone to UTIs but am now. I’ve had many UTIs and bladder issues since my surgery. Even without my period flowing, I’m prone to pelvic pain. A cystoscopy to check on my bladder about 8 months post-op sent my pelvic and referred pain soaring. Soon after the cystoscopy showed a “healthy” bladder, I was diagnosed with fibro.

My pain doctor says to think of my fibro onset as: my nervous system malfunctioned due to all the trauma. Also, that people who have had any and/or all of the following are more prone to fibro (plus I’ve always had a high fight or flight response, which I found helpful, until fibro…): TMJ (I used to wear a bite guard and still wake some mornings with headaches from teeth grinding); migraines (mine are mostly hormonal; I get them a few times a year, no aura};

IC {that diagnosis is a result of the injury to my bladder. I didn’t have IC symptoms before, and thankfully mine is currently regular}; endo (yes, and both sides of my family have or had heavy periods so I was likely to have them; I have two daughters and am armed with so much women’s health knowledge to help them if they need it}; IBS {mild]. So I have experienced, to varying degrees, all the maladies she listed…

Are you on medications or have you tried medication for any of your conditions?

Fibro:

• -400 morning/700 evening Neurontin
• -Low-Dose Naltrexone
• -Nortriptyline
• -Cymbalta
• -Ketamine infusions about every seven weeks
• -CoQ-10 supplement
• -Daily vitamin with fish oil and vitamin D, etc.
• -Curcumin supplement (a compound found in Turmeric)

My cycle:

-Daily birth control pill

IC

• -Sometimes Urispas and/or Uribel
• -D-Mannose supplement
• -Sometimes OTC Prelief before coffee or a meal that might trigger me. Helps me a ton. I need coffee in the morning to combat my meds so I can drive my daughters to school.
• -Sometimes Aloe Vera capsules
• -Sometimes AZO

As a result of my endometriosis I also have anemia.  My iron has a hard time binding to my blood cells. Do you also have this, or is there anything else you experience directly related to Endo?

I had anemia at onset of my period and in my teens. Sometime in my 20s my period lightened. I also dealt with anemia while trying to stop my period pre-hysterectomy. Taking iron helped though, a week of PMS and then a week of a heavy period, which was exhausting. In my 20s and 30s I began only having a heavy cycle every other month. I generally found that the right birth control pill helped my symptoms.

Did you have fertility problems?

My husband and I were very lucky and got pregnant within a few months the first try and immediately the second.

Do you have any tips or advice to give to others in either getting diagnosed, treated or living with Fibromyalgia and Endometriosis?

Seek the right doctors; it’s OK to doctor shop! Do your research, but don’t just rely on “Doctor Google.” Find in-person and online support. Re fibro: there is always a new medicine, study, or supplement to consider, and another round of PT or a wellness group to do or join (I’m going to join a year-long wellness group in Feb/March through my pain doctor’s hospital that has PT, OT, an MSW, group meetings, and pain management). We are #fibrowarriors and there is hope.

Re endo:

Find an OBGYN you’re very comfortable with and who understands how difficult your periods are. Experiment until you’re on the right birth control if that’s the option you choose to help you. Being on it has never felt like a choice for me. Also fertility issues are unfortunately so common, and there is no shame.

Connect with Jennifer:

• Blog: fortyover.blog
• Twitter: fortyoverlivin1
• Instagram: fortyoverlivingwithfibro
• Facebook: fortyoverlivingwithfibro

If you would like to be featured on FibroMomBlog to tell your chronic illness story please email me at suzanne@fibromomblog.com If interested in joining The Spoonie Exercise Challenge visit the article here.