AutoimmuneErin

09/23/2023

Please spare a moment to sign this petition and help this women with Lou Gehrig’s disease (aka ALS)

Change Durham Student Transportation Services Discriminatory Eligibility Criteria

11/12/2022

Anyone care for a bite of my uterus? 😝

I think my fav was asking my 90 year old grandfather if he likes the taste of my uterus 🤣 He wasn’t impressed.

Super happy and thankful that my monthly subscription is finally cancelled! Death to my uterus was honestly the best thing. Definitely got rid of the excruciating, dropping to my knees in pain. It will still be a long recovery as the longer you are in pain, the longer the recovery time and 18 years is not a short amount of time.

The Pathology results:
✖️ Endometriosis of Bladder
✖️ Endometriosis of Bowel
✖️ Endometriosis of the Cul de Sac
✖️ Endosalpingiosis (which is a very rare cousin of Endometriosis) of right fallopian tube
✖️ Paratubal Cysts of the Right & Left Fallopian Tubes
✖️Adenomyosis (when the lining of the uterus starts to burry itself and invade the muscle layer of the Uterus)
✖️Leiomyoma (Fibroids) of the Uterus Myometrium (middle layer of the uterine wall)
✖️ Left peri-inguinal mass showed benign
✖️ Referral sent to a Interventional Radiologist to investigate possibility ‘Pelvic Congestion Syndrome’ (aka Pelvic venous insufficiency) due to overly enlarged right ovarian vein

All pathology samples were benign as expected.

What does this mean from here? A Part 2: A high possibility of another surgery in the New Year. This means having coils placed in my pelvic veins to stop the blood from pooling in my pelvic cavity. Hopefully this will be the last of pelvic surgery for a while at least. I’m glad I did both the Laparoscopic excision & total hysterectomy at the same and got both of those over with resulting in less delays.

💛 Pelvic Congestion Syndrome is basically varicose veins in the pelvic cavity. It is when the flaps of the veins stop working and blood starts pooling in the pelvis rather than being pushed back up to the heart.

💛 Pelvic Congestion Syndrome is commonly seen in a triad with POTS & Ehlers-Danlos Syndrome (I’m on a 2 year waitlist for EDS to be reviewed and have another 4-8 mo wait remaining. I was diagnosed with POTS 11 years ago.

💛 Extra Pelvic (Endometriosis outside of reproductive organs) is NOT rare!!

11/11/2022

Truth on so many levels!
There never is an end in Chronic Illness. It is so hard trying to plan for that perfect day- especially when you don’t know when that will be. There is always something whether it be feeling unwell, another appointment, bloodwork, scans, surgery, therapy. There never is an end and sometimes you just need to take that that leap of faith and hope for the best. It may work out great and it may not, but you tried. Remember to let your breathe!

09/27/2022

💛 OFFICIALLY 8 DAYS POST-OP!!

After a long 2 year wait due to covid delays and cancellations, I finally had a long awaited surgery. On Sept 19th, I had a laparoscopy for endometriosis, a cystoscopy to check for endo inside my bladder a total hysterectomy (removal of uterus and cervix) and salpingectomy (removal of fallopian tubes). I have only my ovaries left for hormones and so it doesn’t throw me into early menopause. It was definitely a lot to do in one shot, but, I wouldn’t change a thing. I’m sore and tired which is to be expected, but, I’m doing much better than I thought I would be doing.

16 years ago, I had my first lap for endo completed by a regular ObGyn who only checked my ovaries, tubes and uterus. At the time, it was believed endometriosis “reproductive” only disease. Now we know endo is a full body systemic inflammatory disease. Every follow up visit I had with the ObGyn I a different answer as to whether or not I had endometriosis. And her answer to resolving the issue was always the same… “just get pregnant” 🙄.

Now we know that Endometriosis is a full body, systemic inflammatory disease. Needless to say, since then I’ve waited to have a second option. Unfortunately, following healing my Lupus flared up as I wasn’t approved for surgery again until about 3 years ago.

On Nov 2 I will visit the surgeon for follow-up and all the details. My surgeon will provide photos from the scopes showing the areas before and after excision. Alll biopsies, scrapes including confirmation of adenomyosis of my uterus will be provided. The surgeon did come visit me in recovery and let me know he did find bladder and bowel endometriosis and a dilated vein to my uterus (not exactly sure what that means yet).

I am just really looking forward to healing and getting the results!

💛