Things I wish I would’ve known/done sooner:

I am a 27yo female who recently was diagnosed with endometriosis, pelvic congestion syndrome, sciatic nerve entrapment and likely adenomyosis and may thurner syndrome.

I am 12 days post op from surgery and here are tips I wish I would’ve known sooner!🫶🏽

1. Seek help from a well respected OBGYN not your PCP. (They are more trained to look for endo/PCOS/hormone related issues)

2. Similarly, ask if this OBGYN does imaging within their facility. (Again they are more trained in various techniques when capturing and reading the images=more likely to spot abnormalities)

3. STOPPED BIRTH CONTROL SOONER: by staying on birth control for 12+ years, I was masking what my body was trying to tell me. It wasn’t until I got off that I found I had PCOS/endometriosis/pelvic congestion/etc….

4.Continue to ADVOCATE for yourself. Don’t take no for an answer. Use your resources to research prior to everyyy appointment. You have limited time, ask your provider for anything that may help you find your answers.

5.Which leads me to tests: for endometriosis there is not a lot, other then exploratory laparoscopic surgery BUT sometimessss you can find evidence of endometriosis through… -Transvaginal/pelvic ultrasound (done/read at an OBGYN office) -Pelvic MRI, gel protocol (with and without contrast) -Ca-125 marker (blood draw)

*Do not be discouraged if everything comes back NORMAL! I had multiple issues including endometriosis and my results were all relatively normal. Trust your gut and your symptoms.

6. Track symptoms daily/hourly religiously!! I did not do this because I was so overwhelmed but it’s SO helpful to have a log. Write it in your phone notes or wherever

7.Utilize Chat GPT/ AI: to keep track of your symptoms, upload imaging reports, and provide suggestions/recommendations on what to do next. This is ultimately what led me to discovering my diagnoses and how I found my surgeon.

8. Don’t get ahead of yourself. Try not to worry about things like future fertility or things down the line until you have an official diagnosis.

Excision Surgery:

9. Get a second opinion. Not a bad idea to hear what multiple surgeons think.

10.Excision over ablation.

11. Everyone is scared before surgery. It’s soooo nerve wracking to not know what they’ll find/if the surgery is all for nothing. This is normal. I was so nervous they wouldn’t find anything, and felt so alone because I didn’t even know what to tell people since I wasn’t sure I even had endo.

All things Post-Operation: (endo excision, hydrodistention of the bladder, uterolysis, hysteroscopy with a D&C, and sciatic neurolysis)

12. Items I used daily: SHOULDER heating pad (post surgery there is terribleee gas pain that rises to your shoulders and causes horrible sharp pain-this was my #1 recommendation), slant pillow, #2 compression socks (I also have vascular issues so this was my second priority), sleep dresses/loose underwear/veryyy loose sweat pants (size up), maxi pads, gas x/naproxen/tyelnol, stool softener/miralax, peppermint tea

-I briefly used a walker, but it was honestly not super necessary, and I got a shower seat thinking it would help, but I couldn’t sit due to pain….so don’t waste your money.

13. Recovery: I had endo excision and vascular nerve entrapment neurolysis of the left sciatic nerve. I had 5 incisions and my surgery was roughly 2.5 hours. I left the same day and was able to even sit and eat dinner with my family (in extreme pain) that same evening. Everyone is different.

The first few days was around the clock oxy and other pain meds, moderate vaginal bleeding, lots of sleeping, terrible gas pain in the abdomen and shoulders, discomfort with peeing, barely able to walk and feeling like my incisions were pulling me down causing extreme hunch. Every day improved a dramatically however there is persistent pain standing/laying/walking/sitting. I am day 12 and have only left my house once. I will come back for an update!

I hope this helps!!