As you know, from time to time we get offers to review products that manufacturers may feel are useful to our readers. I like to extend those review opportunities from time to time to other Warriors in my local support group. So, today, we’re publishing another review by Nicole. And the one condition I make when accepting a product is our reviews will be unbiased and 100% honest; no sugar-coating anything.
Ovira reached out to use with their new product, a discreet device that may help with menstrual cramps. But without further adieu, I’ll let Nicole take it away:
Diagnosed in 2017, Jazz shares her Endometriosis story with us today.
Jazz’s Journey: I am 23 and was born in Northampton, UK where I continue to live with Cerebral Palsy and Stage 1 Endometriosis. I was born with my disability and I was diagnosed with Endo in November 2017. At 16 I started the pill, Femodette, because my periods were really heavy and really painful. I was given Mefanamic Acid to help relieve the pain and it did nothing. I was taking Paracetamol and Ibruprofen and was even told to stop crying in school because “it sounded like I was giving birth.” I was given another pill to take after Femodette failed to work called Regevidon.
L. George was diagnosed when they were 25 years old. Today, at 52, they share their arduous journey with us.
L.’s Journey: This is really tough to tell, as I have suffered with this awful disease for so long. I barely used to notice my periods in high school. Then, around age 21, the pain became so unbearable, but I just thought it was normal period pain. I never believed in going to doctors or taking any kind of pharmaceutical medication for pain. My mom raised me to never take aspirin or go to the hospital, no antibiotics for the frequent ear infections and bronchial infections I seemed to get a lot growing up. It was not uncommon for me to have a high fever (over 105F) as a child and ‘sweat’ it out, after dealing with it for at least a week wrapped in thick blankets to make me sweat. I never took any aspirin, or other OTC for the pain I felt at age 21.
Yesterday was horrendous to get through. My pain was almost always an 8 to 9 out of 10. It was SO bad I reminded me of my periods during my 20s. HORRENDOUS. In a ball, crying, and couldn’t find any relief in any position. I barely got five hours of sleep last night, but I’m at work today with my pain down in the 4-level. I can do this.
I met with my gyno/surgeon yesterday to discuss my recent ultrasound: my left cyst is shrinking! It’s down from a 2.3cm to a 1.2cm. Both he and the radiologist feel it’s a simple cyst that is resolving itself. No more need for another ultrasound in two months! YAY!
My explosive pain on Day One of my period yesterday was met with options. He cannot prescribe Tramadol (which is the only thing that works for me when Naproxen doesn’t) because it’s an opioid. So, back to those options:
Lupron Depot: no
Birth control pills: no
Depo Provera: no
Acupuncture: I can’t afford it
Pelvic floor therapy: I can’t afford it
Pain Management doctor: yes
So, the plan: Get the referral to a pain management doctor (he recommended one and I already emailed my PCP for the referral) and see how that goes. Head on back to Dr. Kurtulus in February to discuss how things are going.
If still desired at that time, discuss another excision surgery and a hysterectomy to remove at least the cervix and uterus (they still suspect I have Adenomyosis), leave both ovaries if both can remain; remove one if one appears it needs to be removed. And excise any Endometriosis he may find, as well as adhesions an restore anatomy to its rightful place.
I was in so much pain in the appointment that I just cried. I felt like such a boob.
Today’s pain levels are much more manageable. And I just received word that this Friday’s colonoscopy is approved by my insurance, so I’m glad I didn’t take any NSAIDs yesterday.
Having a plan, even one that is so far in advance, helps with the mental aspects of coping. And I’m grateful for even that much. And thank you to everyone for your support yesterday!
PS – I love my doctor and his staff. Even though I wasn’t in my best mood and form, they were all so super supportive and positive and loving.
I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.
As usual, this isn’t meant to scare you. Just inform you…
As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!
After suffering from horrible periods and cramps since 13 years old, Erika 18 years old when she diagnosed with Endometriosis. Living in Ireland, she shares her tale with us just three years later:
Erika’s Journey: This is just a short story of the life and pain I’ve been living in! My name is Erika, I’m 22 and was raised in Dublin. I still live at home with my mother and brother seeing as its so hard to find a home at this minute in Ireland. It all started when I had my first period, I was in a lot of pain and had no clue of actually what was happening to me? All young girls oh I can’t wait for my periods to come so they would feel more mature ‘grown-up”. Where with me it was a different story completely, from my first periods all I remember was pain, very severe pain and didn’t know how to control it.
So, today I had an appointment with my gynecologist and surgeon, Dr. Mel Kurtulus. It was to discuss my Endometriosis symptoms, which I felt have been worsening. My (two) July periods, and my August period were horrendous. Going through my 2017 Pain Diary, March and April were also up there on the pain scale. I was all prepared to go on in and ask for another surgery…and possibly a hysterectomy just to rid my life of periods (since that’s when most of my pain is present). I know it’s not a cure, but it would most certainly help some…
Then, last Thursday evening I started my period: the night before I was to leave for a family camping trip…I was devastated. I expected to be fully-medicated the entire weekend. I packed my Naproxen Sodium, my Tylenol 3 with Codeine, my Tramadol, and my Zofran. BUT…surprise surprise…my period cramps NEVER rose above a 1 (on a scale of 1-10) for pain levels! I didn’t even have to take an Ibuprofen…the ENTIRE weekend! (Insert elated exclamation here)
So, I have a very important question for you, my Readers. I value your input and feedback. I always have. But now I need your advice…
When do you know when it’s time to go back to your doctor and let them know that your pain is returning, that you’re afraid your Endometriosis is back with a vengeance, that it may be time to begin pursuing yet another surgery?
Yet, here I sit afraid that it’s still all in my head. That I’m blowing my pain out of proportion. That I’ve lived without it as intense for months and am now not used to it and am labeling it as large, debilitating pain.
(A quick note from me: I cannot believe I get to update this article, originally written in July 2017 – now I get to add to it in July 2021!)…
Can you imagine cutaneous Endometriosis in your rump! Your crack! The behind!?!
A study published online in June 2017’s edition of the Journal of Gynecology, Obstetrics and Human Reproduction discusses a case of Endometriosis in a very peculiar and very extra-pelvic location: the buttcrack!